Cockles warmed...

I had my first fire tonight!  It warmed my living room up six degrees!  I spent the evening at a heavenly 61 degrees.

I also had the bestest moment at therapy today.  No, I did not have a break through, but Amos did!  When it was time to leave, he put his paw up on my therapist's legs in his "pick me up" stance.  She did not understand what he wanted and didn't even touch him.  She's been very careful not to scare Amos.  I think I should tell her to sit on the sofa with me next time to see if he would come visit her.

Love me; love my dog.

I also want my beloved Fluffernutter to love those who are important to me.  He's been visiting her for 15 months now.  It is sort of a formal environment, so I wouldn't be surprised if he's confused about her.  But it sure did warm the cockles of my heart to see him show trust of her.

Not that it has anything to do with trust, but I decided to let him be an especially fluffy Fluffernutter for a while.  So, I have not sheered my sheep in a while.  He is just starting to poof out a bit.  Soon, I shall give him a bath so his curls all curl back up.  After a while, they sort of straighten out into more of a Shaggy D.A. look.  Not that I mind it.  But I do love me some Fluffernutter curls!

Aside from the cockles warming, the rest of my day, save for a lovely little conversation with my dear friend Becky, was working over my number crunching spreadsheets and my checking and savings register.  Both are projected out to the end of 2019.  When I get a new bill or discover yet another expense that I did not expect, I turn to them to see how I might figure out a way to address the financial problem.

It seems that not a day goes by without being punched in my financial gut.

September and October were both $242 over my budgeted medical expenses ($250).  One was $242.05 and the other was $242.51.  The near identical amount sort of cracked me up in a maniacal I'm-losing-my-mind sort of way because the two months did not have identical expenses.  The math just added up that way.

IF November and December turn out the way that I am projecting, I will be under my budgets medical expenses for both months.  However, I will be nowhere near making up the $484.56 shortfall.  Plus, I was short in August, too.

My blasted body.

I just do not know how to make up the shortfall.  My disability payment has been slivered so much that the metaphorical knife cannot divide it any further.  So, I look at every darn number in my expenses and every number in the register to see if there is anywhere where I could save.  Even a single dollar is important to me.  Heck, the truth is that I count pennies most every day.  I price everything to ensure that I am getting the cheapest price possible on the purchase I have chosen to make.

I spent hours and hours every single day pouring over my numbers, looking for some sort of inspiration.  It amazes me, in truth, that my life has come to this.  Hours of dealing with bodily misery and, when able to turn away from that, hours of dealing with financial misery.

This month, I did get some really good deals that will save me money going forward.  However, it means that I am nearly out of money for the month.  This is a problem because I did not realize that I would need gas again.  I had a few more appointments than I thought I would and did not take into account that gas mileage.  Plus, it was a far trek to do the physical for volunteering.

I have to trek out to the hospital this week and next, which means gas.  My light is on and I hit the empty line when I went to therapy today.  I need gas.

I will charge it and then put the overage this month into next month ... subtracting it from available spending.  But next month is a tight month, because it is a Subscribe-and-Save month.  I save money using that service, but it means spending more money at a time every other month.   So, starting with a deficit will be especially difficult for me.

I have to though, because I cannot just spend more than I have and just let the bills pile up.  I am not made that way.  Pay as you go when needful and never charge more than can be paid off at the end of the month.

Sjögren's has surprised me at just how much it is already ravaging my body.  But it flabbergasts me just how much it has already ravaged my finances.  The dental expenses alone are rather horrifying.

The thing is ... if the fluoride treatments do not work, I will need to look at having my teeth pulled and getting dentures.  I cannot seem to get the dentist to understand that need.  But I simply cannot keep getting fillings if I will need fillings on top of fillings and then crowns and then root canals and then end up needing extractions anyways.  I cannot spend thousands of dollars trying to save teeth that are doomed.  Heck, I cannot spend thousands of dollars saving teeth period.

Right now, if all goes perfectly (and you KNOW that will not happen), in November of 2019,  I will dig myself out of my teeth expenses to date and will have finished paying off the television and the phone.  So, I am not looking to have any additional teeth expenses, especially since it is a pretty penny to have the fluoride paste for the trays, fluoride treatments in the office, and two exams, sets of x-rays, and cleanings in a year.  Oh, plus lots of tooth brush heads and toothpaste and fluoride rinse with the brushing four times a day and rinsing twice a day.  Add the rather pricy cost of the saliva medication that I am taking for my teeth (and mouth) and I really have no room in my meager pocketbook left for any fillings and the like.

I wish we could flit ahead to the end of February 2019, when I will get my next x-rays and learn if I have at least slowed down the decay in my teeth, if not arrested it, with the nightly fluoride treatments.  I just want to know where I stand.  Or rather where I will stand.

Anyway, it is hard to engage with anyone anymore because of where my life has landed.  Misery abounds.  And, being just me, I have to spend nearly all of my time and energy and cognition on dealing with and trying to reduce that misery ... if at all possible.

So, it really was sweet to see Amos turn to my therapist and ask for a pick-up.  Silly puppy dog.  He doesn't understand why most folk don't walk around with dogs on their shoulders.  My therapist is all about safe places, though.  I bet she would let him park himself up there if ever Amos got the courage to do so.

He was happy to turn to me and ask for a pick-up so that he could scramble to his place of safety.  I was happy to oblige.  In truth, I feel, too, feel comforted when Amos is up on his perch.

No fall...

We didn't have a spring and it looks like we are not going to have a fall.  Just a few days ago I had to have the air-conditioner running and tonight we have a hard freeze warning.  SIGH.  That means that I spent today rushing around doing Fall tasks in between dealing with near-fainting.

I disconnected both garden hoses.  I have quick connects on them, but I couldn't remember how to use them.  So, I ended up just unscrewing both of them, which took quite a bit of time with my weakened hands.

October is also the month to change out the batteries in all the smoke detectors.  That means standing on ladders and working with my arms raised up over my head.  Both of those are not the safest actions for me, the latter being one of the worst things for me.  However, I was able to finish this task.

With the hard freeze coming, that meant I needed to drain and remove the pumps from the two outside fountains.  The one on the front porch is difficult, but manageable.  My fountain out in my beloved haven, which ran ever so beautifully this year, is near impossible for me to drain.  What I should have done is brought a container out and did some bailing.  Instead, I lifted the top pot out whilst it was full of water, though I did empty everything else out of it.  My back protested and I am worried I might have hurt my SI joint again.

The large, bottom pot I can drain by tipping it over.  However, I stressed my back further by carrying it to the garage.  I believe that, next year, what I need to do is leave the pots upside down outside.  It is just that they were quite an investment and being in the garage is safest.  There is no possibility of freezing water cracking them if they are tucked away in the garage.

Another task, though not a Fall task, was that I needed to bring the Dr Pepper in from the Highlander.  When I went shopping last week, I was reminded how grateful I am to be able to use my ancient garage.  Carrying groceries in from the garage is much easier than carrying groceries in from the street out front.

I was knackered after shopping and carting in the rest of the groceries, so I left both bags of Amos' food (if I spent $40 in dog stuff I got an instant $10 off) and all four boxes of Dr Pepper (on sale for just $11) in the car.  I kept telling myself I would bring in one thing a day.  But whenever I would think about it, I would become so weary that I procrastinated until the next day.  And the next day.  And the next day.  But with the hard freeze coming, I was stuck with carrying in all four boxes in one afternoon lest I lose them and end up with a mess in my vehicle.

The wind chill outside is already down to 37 degrees.  So, all of that outside work was mighty cold.  It sort of cracked me up, though, that the effort I was making had sweat pouring off of my head since that particular medication side effect seems to be sticking around permanently.  Well, it cracked me up, made me embarrassed, and left me a bit despairing.  But I did laugh some as the sweat splashed into the pool of water I had dumped out on the pavers.

The two giant spotted begonia pots are glaring at me, but I am ignoring them.  I need to prune them and start rooting the pieces ... but that can wait until tomorrow.  Or the next tomorrow.  Or the next one after that.

Despite what it may look like, I really am a very lazy person.  Maybe I should change my name to Iamanauseatedprocrastinator.

Icy...

One of the symptoms that I have that I do not yet have any help is icy skin.  I wish I understood better, but it has to do with the vascular function not working properly.  Your vessels dilate to bring more blood to warm your skin.  It's another autonomic function that is not working properly.

For years, I have worn baggy clothes to hide my body because of my shame.  Now, I wear long sleeves and long skirts or pants because I need cloth against my skin ... sort of as a substitute "skin."  This is because of how miserable that I can get when air touches my skin when it is cold.

The air causes waves upon waves of chills to wash over me.  Each wave makes me colder, my skin icier.  It is a terrible problem when I crawl into bed.  I have to be so very careful to keep any part of my skin from touching any other part, such as my legs.  Icy skin touching icy skin is unbearable and makes me start shivering uncontrollably.

When I am in bed, even air beneath the covers can cause great trouble for me.  Once in bed, then, I work to push out all the air beneath the covers and tuck the edges of my covers beneath the side of my body.  Since I get up every two hours or so for fresh ice packs, trying to keep myself warm is a great battle I fight much of the year.  For that reason alone, I will miss the gargantuan amount of STINKIN' HOT SWELTERING days we had this summer.  Now that the temperature has dropped, the battle has once again begun.

My beloved amlodipine also seems to have lost its mojo.  I can no longer touch things in the freezer without my fingers burning in great agony.  I wish I understood the process better.  Why is it that cooler temperatures outdoors (and inside) causes the Reynaud's to worsen?  I already have transitioned to the heaviest weight of my wool sock collection for my beleaguered blocks of ice at the end of my legs.  Thankfully, it only took me two nights to remember that I have a foot warmer for my bed!

It is hard to deal with my skin when it is warm, because wearing long sleeves and skirts/pants in warm weather can cause me to overheat.  And, yet if I do not, I am miserable in the opposite direction.

Then, to add insult to injury, there is the symptom of temperature dysregulation.  This means that my body temperature can drop rather low, chilling me from the inside out.  Or I can react to a relatively lower temperature as if it were wildly higher.  For example, I start getting sweaty and shaky and weak once the temperature inside reaches 72.

The funny thing is that I have always been happy in colder weather, usually going out in the dead of winter with just a scarf and gloves ... no coat necessary.  Now, I have started to become sensitive to the cold in a way that I never have been.  I think it might because of my age.

Is that weird to say?  I pass 50 just a year ago and all sorts of changes in my body seem to be cropping up.  I think I have not been kind enough to my sister and mother about their getting colder as they got older.  And, for that matter, I struggle with how my dearest friend freezes every time she visits me ... to the point of wearing coats and hats and scarves indoors, as well as bundling up in blankets.

I sweat.
She freezes.

SIGH.

Anyway, I have asked my cardiologist about my icy skin, but we have never settled on that topic during my appointments.  I asked my GP this past appointment if she had any ideas.  She promptly got on her computer and looked up the problem.  I love that she does research right there with me.

One answer is drugs that cause flushing.  One of them in calcium channel blockers, which is what amlodipine is.  Out of the list, the option she thought might work is niacin.  What you get over the counter is a non-flushing version.  So, I would need a prescription.  But she didn't sent the prescription for filling because of the pacemaker appointment that I have.  She wants to get the programming issue (if that is the problem) worked out before I try a medication that can affect my blood pressure and heart rate ... and cause pre-syncope and syncope.

Yep.
Another thing that could make me faint.

Why take it then?  Because having icy skin makes my life wretchedly miserable.   I don't know if anyone who does not live with chronic illness, particularly autonomic and autoimmune, can understand what one can be willing to put up with

Photos...

This is how the solarium looked at first.  I had both beds set up in there and it was really crowded.  The bookcase you'll see in the next photos was in here, too.

After lots of thought and musical chairs furniture and a bit of shopping, I turned the room into something more for me and for guests, primarily taking down one of the beds and turning the other into a day bed.

You can see I made the changes in the winter, because the plants are in there, which does make the room a bit crowded.  This is a good shot of the lovely rug that I found and bought with present funds. The rocking chair was from craigslist, $25.

I took photos today to show what I was trying to describe yesterday.  I didn't take one of this wall in the room.  The chair is gone, but the bookcase is still there.

The real daybed frame was my sister's Christmas present last year.  You can see the plants that I moved into the solarium.  You can also see the table/writing desk that I moved upstairs, although the next photo is better.  This one shows how I moved the rocking chair across the room.

I moved the lamp over by the bed, so a guest can use it at night and not have to get up out of bed for the overhead light.  That is where I would like to have a night stand or a proper end table.  That table is really too small to be serviceable next to a bed.  It was free, though.

This is standing behind the rocking chair.  I've never address having artwork in the room.  In fact, I haven't even tried to move the two small prints I had over each of the beds in there.  I think I haven't moved them because

I forgot to redo the pillows.  Amos was frolicking atop the bed whilst I was moving plants and messed them all up.  Poor staging on my part.

Also, the plant stake sticking up out of my beloved string of pearls is from a pot that I took to the garage.  I stuck it in there temporarily to not lose it (it is a dragonfly) and forgot to remove it.  Again, poor staging.

The frame on the table/writing desk is a drawing my sister found that she made of the two of us when we were little girls.  I would like to hang it up.  I am just not sure where.

Anyway, hopefully the photos can show a bit of the transition I have made to the room.

Here are the ferns!  I think they would fair better in the solarium, but there are hooks above the built-ins already.  I have often thought about putting hooks in the solarium ceiling, but it is lathe and plaster and I worry about damaging it.  There are hooks in the kitchen ceiling, so I know it is possible.  I just am chicken.  Super, duper chicken.


Today, I moved the three dead plant pots to the garage and the four small pots to the solarium, the two jade plants to the solarium, and the other rosemary bush up to the solarium.  That was enough stair work for me, so I have yet to address the leggy begonias.  But at least most of the mess to my visual rest is straightened back up.

That and shivered.

It is so very, very cold in the house.  But I cannot afford to have both the AC and the heat running in the same month.  Somehow, I have to gut this out until November.

Somewhere in there is my beloved Fluffernutter!  I think I might not be the only one who is finding the house cold at the moment!

Oh, wait, there was one more positive accomplishment, thanks to Becky.  Together, we worked out how to share my calendar.  That means that she will know when my appointments are and can help me remember.

I am worried now that I completely missed my GP appointment.  I wouldn't have thought that that was possible.  In part, I am worried because I keep thinking about my pacemaker appointment next Thursday, but I learned today that it is next Wednesday.

Wednesday.
Wednesday.
Wednesday.

I absolutely need to make this appointment.  I very much want to know that my pacemaker is okay and to get some help getting it to work better for me.  

I hate, utterly hate, what is happening to my brain.

For me...

We went from 84 degrees to 34 in just two days.  Maybe three, but I think it is two.  With the Indian summer, I've had to run the air-conditioner up until yesterday.  So, that means that my utilities budget is blown.  Both in the spring and now in the fall, we went straight from one mechanical to the other, heat to AC, AC to heat.  Right now, I am trying really hard not to turn on the heat, but right now the house is 56 degrees.  I am cold.  Really cold.

The other problem is that this drop to 34 degrees was rather unexpected by me.  I have not been paying attention to the weather.  So, the migration of the succulents from the front porch up to the solarium for the winter had to take place rather hurriedly as darkness fell and the temperature was dropping instead of a leisurely pace over several days as I did in the spring migrating them out to the porch.

I brought the Boston ferns inside, even though I do not believe they will survive the winter indoor.  They have quadrupled in size and are rather glorious to me.  So, I thought that I would enjoy them for a while indoors.

I also brought in the giant spotted begonias, but they grew so very leggy on the porch.  It struck me that I should have put them in the back yard, perhaps in the haven.  They could have gotten a bit more sun without being burned back there.  So, I plan to cut off pieces, root them, and re-plant both pots.

I got all the succulents inside, but not upstairs.  I brought the two plant stands down from the attic and  and put them in the solarium.  And I filled them with the plants that usually go on them.  I also brought my most lovely of string of pearls upstairs and set it on the mahogany plant stand.  But the rest of the pots, all small that go on the window sills, I have left downstairs, even though they are greatly messing with my visual rest.

Today had just too many trips up and down the stairs.

Being Friday, I started the laundry after showering after my treadmill torture.  That means extra trips up and down the basement stairs.  The migration meant extra trips up and down the main stairs.  And I had already worn myself out completely before realizing the plants were at risk.

Why?  Well, I've been thinking about working on the solarium for a long while.  I've been scouring Craigslist for a writing desk and a night stand for a long time.  I want to be able to work on the notes I sent to my family and friends every two months up in the solarium.  I want to make the room more inviting to me.  But I also would like to make it more user friendly for guests, hence the night stand.

I've not given up searching for a writing desk, but I decided to move this table I have in the parlor.  It is an antique card table, with a top that rotates and folds in half and a drawer, so it can double as a writing desk.  I will not admit what it took for me to get it upstairs.  I oft am willing to sacrifice myself physically when I want something that I am not really capable of doing and have not help.  That I got it upstairs is all that really matters to me.

The side table that I had in the solarium, I moved to the parlor, but it does not really look right there.  I would like another writing desk.  If I found one, then I would put the side table into the guest suite and probably try to sell the antique end table in there.

The other thing that I have been thinking about is to change the chair in there.  My mother encouraged me to get a bentwood rocking chair because it fits with the nature of the room.  However, it is such a large presence in the room.  I would like a chair that is smaller or has a lower back profile or both.  I spotted an antique armless chair that is upholstered with a gentle floral pattern.  I like it, but I think it might not quite go with the botanical rug.  It is only $30, and I am confident that I could get that much for the rocking chair.

I also found a lovely vintage oak rocking chair with its original fabric in GREEN that would match with the bed and the rug and the writing desk that I moved into the solarium.  However, it is not economical at all.  So, I do not see how I could swing it at all.

What would be lovely would be the chair I got for the living room.  It is GREEN and comfortable and  looks just like a smallish club chair, but is actually a recliner.  However, another of those is far, far out of any price range.  I have looked at recliners on Craigslist, but they are all pouffy and oversized.

In any case, I am happy that the writing desk is up there, now.  I am looking forward to being able to write and work up there.  Perhaps if I did some of my number crunching up there, I might be a tad less despairing about it.  Or maybe it would be a tiny bit easier to write here on my online rememberer were I to work on it up there.

I'm coming up on eight years of living here and it is has taken me so very long to find the courage to claim that lovely room as mine ... as a place that could be for me instead of just for guests.  I mean, I never even think of using the basement living space or any of the spare rooms.  But when it is really hot in the summer, it would make sense for me to sleep down there if I wanted.

It is like sleeping on a sliver of my bed all these years after switching from a twin to a full bed.  I try to squeeze myself into the smallest space possible ... all the time.  As if I do not deserve more.  Or as if I should be as small and un-bothersome as possible.  Even in my own home.

Today...

I am seriously considering legally changing my name to Iamnauseated.  That way, I won't be seen as complaining when I speak those syllables all the time.

I woke up today and realized that the triggering is fading.  By that I mean, I am not re-living every time that I find my mind quietening.  Sometimes I am awash in the flashbacks, but most of today I was awash in the aftermath: the way I see myself.

I am dirty.
Fundamentally.
Irrevocably.

My big accomplishment today was that I caught up on my dishes.  I have just been so very tired.  At least I do not have anything until next Tuesday.  Then church on Wednesday.  And the pacemaker appointment on Thursday.  The latter is already troubling me.

I think I need my head examined just for making it.  But I have fainted thrice now without the pacemaker reacting.  The nightly testing has ceased.  And I also have no help with near-fainting.  The algorithm that helps with the fainting is called Closed Loop Stimulation (CLS).  The CLS learns from the data the pacemaker collects about your heart activity and adapts.  You can dial up or down the sensitivity of the CLS, which is something my cardiologist mentioned that he could do when I last saw him.  But he only wanted to make one change at a time, and I wanted my heart rate turned back down.

Going to the pacemaker clinic costs money.  So, well, I avoid it.  But mostly I avoid it because I have to be wired up and being wired up means being exposed.  I just don't do well with that.  I have tried to stay with the same pacemaker nurse tech and I have her next week.  But, all in all, because being wired up and the strain of what the interrogatory makes me feel in my heart, I avoid going to the clinic like the plague.

And yet I am going.

I feel strange without the stress of the nightly testing.  That panic when my heart starts speeding up because a machine wants to give it ago is something that I have come to take comfort in, knowing the pacemaker was doing its job.

Now, the odds that after not even three years mine is having a problem are so infinitesimally small they are not worth even pondering.  And yet I worry.  Who wants to have her pacemaker changed?  Worse, still, who'd want her leads replaced?  Actually, I am not even sure they are replaced.  They might just be left and new ones inserted.  Once my cardiologist talked about the "space junk" that gets left inside the body.  AWK!

So, the appointment is made and I am trying not to think about it ... about both being wired up and about my fears as to the change in my pacemaker's servicing of my body.  In all likelihood, the settings just need to be tweaked.

The oddest part of my day?  Amos' incessant desire to play fetch.  He's been enamored with that squeaky bone ever since I got it.  When the first one expired, I got another and then another.  Bone #3 has lasted longer.  Tonight, he wanted to play fetch and kept it up through three full quarters of the football game.  Normally, he's good for about 5-10 minutes tops.  In fact, he sat and whined his way through the third quarter because I kept trying to stop playing.  Finally, I was able to ignore his whines long enough so that he gave up.

Normally, he gives up so quickly because he's all worn out and needs a nap.  But, tonight, he was raring to go.  And go.  And go.  My funny Fluffernutter!

Blasted nerves...

I learned something today about nerves.  You have nerves that tell hot and cold.  You have nerves that  tell pain.  And you have nerves that vibrate.  I learned this because I was telling my GP that I keep having these spots in my body that vibrate, like a phone telling you that you have a message when it is on silent.  For me, the new sensation is rather discombobulating.

I actually also have other new symptoms, but they are more of the same old, same old: numbness and tingling and shocking pain.  The shocking in my hand sometimes now goes up my forearms.  And I have numbness and tingling in my upper arms, just below my shoulders.  But this vibrating?  Well, it just bothers me something fierce.

It started so randomly that I thought it was my pacemaker, because it was happening in my chest.  But now the vibrating happens in many parts of my body.  I thought it might be my muscles.  But, alas, I learned today that it is, most likely, my nerves.

The next time it happens, my GP said to put my hand over the spot.  If it is the muscles, then I will feel my fingers move.  If they do, then the muscles are fibrillating.  But she does not believe that will happen.

Those blasted nerves of mine.
SIGH.

I am not sure if I have written that the neurologist believes that all of my neuropathy is from the Sjögren's.  In fact, she believes that the Sjögren's caused the dysautonomia.  If that is true, then I have had it much, much longer than I believe.

I spent about three years complaining about my dry mouth that no amount of water helped.  I kept getting checked for diabetes.  But, really, I might have been complaining longer.  Still, I was diagnosed with dysautonomia in 2010, after fainting for three years.  So, could I really have had Sjogren's for 11 years and not know it?

I am not much interested in knowing what caused my dysautonomia.  Sometimes, a cause can be found, but what does it matter?  Dysautnomia is incurable.  The point is to find the helps that can make living with it more bearable.  Quality of life is much more important than knowing  the cause.  I say this because I see folk online chase the cause to the tune of thousands of dollars and testing after testing and testing.  Many take the tilt table test many times.  Once really is enough.

The response about the Celebrex is more waiting.  Most likely, I will be moved to immunosuppressants, and, since the prednisone is working for me on the joint pain, they should work for me.  So, Celebrex might not even be a factor.  But, if I need it, Celebrex will be a try-it-and-see sort of situation.  Meanwhile ... the pulmonologist has me staying on the prednisone.

Of course, the MRI results could put a wrench in to the rheumatology and pulmonology plans.  But I am rehearing the news that it will be normal and everything is just my blasted nerves.  That's dysautonomia for you, a wretched life with little that shows up on standard medical tests.

Would that it were some company believed that investing in autonomic nervous system research had value.  SIGH.

Finally...

I HAVE A BLOODY MRI APPOINTMENT!!!!

It is a veritable miracle!  I believe that my sister's two-sentence message had a large part in getting that appointment.  But I also believe that the Parkview scheduler did, too.  Her getting the information from the MRI department about the latest obstacle was the closest that I have gotten to getting an appointment, if that makes sense.  And, of course, the prayers I know folk have raised during this long, long, long battle.

It really is almost too good to be true.

The best part of the news is that the appointment is October 29th.  I had my blood work on October 3rd.  This means that I do not have to repeat it for the contrast.  The results are good for 30 days and my numbers were low enough to have the contrast.

I received a call from my GP's office today.  And a text.  And a message.  I believe they are worried that I shall forget my appointment on the morrow.  I was not offended.  In fact, hearing the receptionist's voice on the phone made me start laughing.  I told her that I already put up sticky notes in the bathroom and in the kitchen to remind myself.  Somehow, now that my monthly appointments are not all at the same hour or even on the same day (though most are), I will need to train myself to start checking the time.  In the meanwhile, it doesn't bother me the overkill on reminders.  After all, I have that broken rememberer.

Gee ... I wonder how many reminders I'll need for that MRI appointment.  I mean, every time I think about it, I am still in disbelief.  I might think it a figment of my imagination by the time it rolls around.

Part of me wants it to show something dire to explain the shocking in my hands and part of me is prepared for it to be normal, the way most tests are with dysautonomia.  That's the difference with Sjögren's Syndrome.  I keep having results that are not normal, results that are blow-by-blow reminders that my body is destroying itself.

In any case, I am deeply relieved—when I can believe it is actually going to happen—that I am finally going to have that MRI.  I will have an answer.  The neurologist will have a direction.  And I can move forward, medically, in a significant way.

Eggplant...

I awoke this morning awash in sorrow and loneliness from my dreams.  It was a welcome respite from feeling dirty, but was a burden in and of itself.

Sometimes my dreams linger for days and sometimes just getting up and moving about causes them to fade from my mind, from my emotions.  Of course, I prefer the latter.  Today, that was not to be.

It is strange to find myself weeping for folk who never even existed.  I wish that I were weeping for the little girl I carry inside.  I have not yet learned to do that.  I wonder if I ever will.

Just a bit ago, I had eggplant seven days out of nine because of the final harvest from my second raised bed.  I didn't mind because I have enjoyed eating fresh eggplant ever so much.  In fact, I was a bit sad to know I would have to wait 10 months before enjoying the same again.  Then, Friday, I discovered two that I had missed.

One was almost past ripe, so I picked it immediately.  The other I left to grow a bit more, since we are having an Indian summer.  Today, I had eggplant, roasted broccoli, and 15-bean soup for dinner.  Being a smaller one, the eggplant disappeared all too soon.  I am hoping the other one will grow larger before I need to harvest it.  I have yet to figure out what overnight low is too low for eggplants.

Having a surprise eggplant was the highlight of my day.

I did have a productive conversation with my sister, though it was difficult at first.  I was trying to tell her about my wretched Friday and she started giving me suggestions on how I should have corresponded with the cardiologist over the past month.  Her suggestions were things that I did.  When she suggests them, I feel criticized, as if I wouldn't already be doing such things.  But I know that she is only trying to be helpful.  Things were a bit tense as she tried to listen and respond whilst I grew a bit testy and terse in my replies.

But then she had a bit of revelation about how it was that more than a month could pass and I end up with being told that I was to make the appointment I had been assured the cardiologist was working on making for me.  Then, we came up with a better construction on why it is that the radiologist was asking for the documentation.  And, over the course of the next few minutes, the frustration that has been plaguing me since Friday faded away.

I had held off writing a message to my cardiologist about needing the documentation and being unable to make the MRI appointment myself because I didn't want to regret the words that I used.  My sister talked me through a simple message and I got it sent.  Just two sentences.  And she pointed out that I have not been in the business world for eight years now, so I wasn't seeing the issues with written communication that arise on a daily ... nay hourly ... basis.  She's right.

She also said that this could be a lesson for me.  She said that it should not have taken more than a few days to get that appointment, a week at the best since it is a busy practice and the added request from the MRI department.  So, next time an issue arises, she encouraged me to take my cue from what has happened and do whatever I thought needful after that week has passed.  In this instance, I could have driven over to the hospital and stood at the reception desk in cardiology and asked what was the delay with the appointment.

It's funny.  If someone else told me that week after week she kept getting wait-and-see messages back from her doctor, I would have said to march into the office and ask for what you need right then.  But I had appointment after appointment, bad news after bad news, as my sister pointed out, and I just let this go.

I think, too, it is that this has dragged on since last December, when my first MRI appointment was canceled.  Too many times, I was told that if I did X, then I would get my appointment.  I think that a part of me has given up and so it was just easier to wait on my cardiologist, even when the waiting got to be downright ridiculous.

And it was.

When I see him in December, I want to have a blunt conversation about the problems in communication with the nursing staff who manage the messages.  My GP reads and responds personally to my messages.  His go-through-the-nurses-and-they-summarize-both-my-messages-and-his-responses method of communicating is not working.  Thrice, now, those summaries have been wrong and have kept me from getting timely medical care.  Mostly, though, the stress of this has just been too much for me.

I feel such the failure, having parsed the situation with my sister and realized just how much I have not done to move the process along.  Gosh, even she is tired of hearing about it because she's been hearing about it since January.

Had I managed it better, I wouldn't have had the spinal tap.  That blasted $300 spinal tap.  Had I managed it better, I would have had the MRI as least by the end of June or the beginning of July once I learned about the Medicare memo on scans on patients with implanted devices that my cardiologist discovered at the end of May.  Had I managed it better, I would have then had the MRIs on my pelvis, left foot, and left shoulder so that my GP could know how to better treat them.  Had I managed it better, I would be drowning in the frustration and stress and angst of this whole mess.

I wonder ... now that I know exactly what the MRI department wants in order to give me an appointment ... how long will it be to get that documentation????

Yep, the eggplant was the highlight of my day.

Doing something...

I tried to talk about the exam in therapy on Tuesday.  But I couldn't.  I mean, I talked enough for her to understand and to see that I was awash in flashbacks, that I was re-living, not remembering.  But I couldn't talk about it.  And I need to.  I realize that even more having watched a show about someone with PTSD.  In two weeks, when I go back, I want to try again.

I am weary of living frozen in filth.

My therapist asked me to spend at least 5 minutes a day in positive interaction with another person.  Yes, well, I want very much to avoid other people.  I do because I feel the fraud.  I feel I cannot be me, be as I am, and so I pretend that all is well.  I have so very little in me to pretend.  It is exhausting and too many other things in my life are exhausting. 

Wednesday, I had my kidney function tests, which were, for once, better.  The hard part about this is that I have been off of Celebrex for a month, now.  I am quite worried that I will not be able to go back on Celebrex once I finish the prednisone.  As of now, I do not have a post-prednisone pain management plan.  I don't know if I will be put on immunosuppressants or if they will work for me the way the prednisone is.  I just know the rheumatologist does not believe that I should remain on prednisone long term.

More waiting.

Friday morning, I had a missed call from one of the cardiology nurses.  When I called back, I absolutely lost it, in my very soul, when she told me that the note on my chart was that I just need to schedule the MRI.

ARE YOU KIDDING ME?

I'd been hearing for over a month about how my cardiologist was working on getting the appointment scheduled!  I was floored and it took everything I had not to start yelling in protest.  I did say that this was insane.  And after questioning I was to make an appointment for a few minutes longer, I hung up.

It was a long while before I was calm enough to try calling Parkview Scheduling.  In a nutshell, after much time on the call, I learned that the obstacle was that the paperwork by my cardiologist documenting that I was able to have an MRI was not in my chart.  Paperwork that could have been done any time between my appointment last January and now!  I lost it again, even as I thanked the scheduler for getting the MRI department to finally say why it was that I still could not make an appointment.

I asked to have my cardiologist call me.
He did not.
No one did.

I still do not have an appointment.

Still at my wits end over the MRI runaround that I've been dealing with for months and months and months, I headed to my monthly GP appointment, worried about discussing the kidney tests results and relieved that I would be able to talk with her about other things I am battling.  Imagine my dismay when I learned that I had missed my appointment, it being at 3:00 PM, not 4:00.

I was stunned.
And devastated.
And distraught.

I turned white and started battling pre-syncope as my pacemaker began to start its prodding.  The receptionist looked at me and then went to talk to my GP.  She is off on Tuesdays, bust staid that she would meet me at the office in the afternoon if I were free then.  "Of course!"  I answered.  However, I immediately felt stupid for getting the time wrong and for bringing my GP in on her day off.  I wanted to say that I would just wait until December, but I couldn't get those words out of my mouth.  Instead, I asked to have my gratitude passed to my GP for creating another appointment for me.

So, today, I determined to follow my therapist's other suggestion:  do something physical that engages the senses and pay attention to the latter whilst doing so.  You know how much I like to DO SOMETHING from time to time.  I decided that my something would be refilling my larder with sweets and snacks.

I was able to make these cranberry muffins without eating one.  All twelve went into the refrigerator!

I LOVE ME some deviled eggs!  These are a bit mustardly, but I do not mind.. One of these days, I am going to work on just how much mayo and mustard and sweet pickle relish I like and write down a recipe so that I have a guide.  Still, I've never made a deviled egg I wouldn't eat.  Readily!

I set out all the eggs that I would be using, dividing them according to recipe.  I had the butter and the single egg that I needed for the cookies on the counter with the mix box.  However, I whipped them up on the other counter.  The counter where the two eggs I needed for my beloved baked oatmeal were sitting.

Two eggs in a one egg mix make for super flat, cake-like cookies.
SIGH.

I have spent over three decades ruining chocolate chip cookies, be they from a mix or made from scratch.  I have never made a proper cookie.  This was a chocolate chunk mix that I was certain would be just lovely, being Krusteaz.  It was one of my Christmas present mixes from my realtor.  I am not looking forward to showing her my mess-up.

At least I have no problem making my beloved baked oatmeal.  Again, I put them all into the freezer, save for the one for tomorrow's breakfast that went into the refrigerator.  I could eat at least three or four of these every time I make them.  And every morning,  However, I stick to just one.  Funny that I  cannot fathom life without baked oatmeal.  Two years ago this December my life changed with that simple recipe!!

I am not much of a baker.  In part, this is because I do not really understand how the different evening agents work.  In part, this is because I oft make mistakes whilst to trying to follow a recipe.  In baking, mistakes can be worked around with good results.  However, in the precision of baking (the things I adore) precludes making substitutions without serious repercussions.

At least the containers in my freezer for tasty desserts are finally full!

It was good to be productive today, to get something done.  I woke, walked on the treadmill, cooled down, showered, and napped.  After my nap, I had dinner, fed Amos, and then napped.  Two hours later, I awoke and set out to bake my way through the evening.

It was good not to sit in darkness.
Thinking.
Feeling.
Drowning.

Day Four and then some...

Day Four.  SIGH.

Day Four, all those days ago, was another day of disappointing medical news that I just couldn't take. I mean, I made no progress in the testing.  The next step was another high resolution chest CT and a whole lot of scary IFs to consider if the CT did not show progress at least.

I worried over the IFs right up until I read the report, which was actually not bad news.  But I remain in a holding pattern over the next steps.

The rheumatologist wants to put me on immunosuppressants.  The pulmonologist will need to switch me off of steroids and she mentioned an immunosuppressant.  The rheumatologist wants to know what the pulmonologist is going to do, because she can piggyback on many immunosuppressants.  But she also wants to know what the neurologist is going to do.  However, I am in yet another holding pattern for the BLOODY MRI.

Yes, that spiel that I got from the cardiologist about the radiologist finally agreeing to the MRI seems to have hit some sort of snag since he has been "talking to scheduling" for nearly a month now.  Without the MRI, the neurologist would then make a "best guess" as to which direction to take.

The thing is, I've started to have fluctuating days with the shocking in my hands.  My GP and the neurologist both think that is because of the duloxetine.  However, on the bad days, the shocking in my hands now extends up my forearms.  In other words, it is getting worse.  And we are mere days away from marking the year anniversary of the start of this bit of misery in my body.  SIGH.

So, right now, I'm still on steroids.
And I'm holding my breath on my kidneys.

I'm two days away from taking a micro-urine test for protein and more kidney blood work.  The former is because a cruder test during a physical last week showed protein in my urine.  That's bad kidney news.  I cannot be having bad kidney news when I am almost a month into giving up Celebrex AND drinking between 80 and 100 ounces of water a day.  [I REALLY dislike drinking water.]  I am supposed to be having good kidney news at this point, especially since I WANT THE BLOODY MRI when and if it ever gets scheduled.  I am fearful of those kidney results, at this point ... but I am not going to put off checking the way that I first thought to do so.  I need to know.

So, after Day Four, I was discouraged and worried and plumb exhausted.  Plus, my planned rest from the 20th until October 2nd got interrupted because I needed to do the CT that following Monday and then the physical on Tuesday.

Tuesday.
Tuesday.

I am trying to find another way to volunteer.  Eons ago, I was a hospice volunteer, so I thought I would look into doing that once more, even though the training is much more involved and I wondered if I could get it done.  The position I would like to do is vigil volunteer, which is someone who sits with those who are actively dying and who do not have family or friends to be with them.  However, I kept missing the training opportunities once I decided to try.  Finally, I decided to not let another month go by no matter how many other things I had in the week the training was scheduled.  The training is what I did on Day One of that bloody long week.

It was not until I had officially signed up and having already sent in my application that I learned I would have to have a physical to be a volunteer.  This is something that was new.  As in ... if I had gone through the training any time before September, I would not have to have a physical.

I almost skipped the training session, but I decided to at least get part one out of the way.  Who knows ... maybe I couldn't even hack a four-hour session and that would be the end of this journey.  Alas, I gutted my way through the end of it and managed to get back home where I could collapse for a while.

After much thinking, and determining that I could have a female doctor, I decided to make the physical appointment and go from there.  If I could get through it, then great.  If not, then I wouldn't punish myself because I at least tried.

The registration process took just over half an hour.  I was exhausted before even getting past the first door.  I then had an eye test, a urine test, a TB blood draw, and the first of three shots for a Hepatitis B vaccine.  Finally, I was back in a room going over my history.  It was there that I learned, having been at the location for nearly two hours ... the location that is nowhere near my home ... that the doctor was a male, not a female.

I felt sucker punched.
And I despaired.

I honestly feel cursed.  If it can go wrong, it does.  And no matter how much I try to advocate for myself, to ask for what I need, I do not get it, for one reason or another.

My choices were to leave and come back another day, making the long drive once more, or to stay and deal with the male doctor.  I wanted to leave.  I didn't want to make the drive, especially with the expense of gas and my utter dearth of funds at this point.  I mean, I have the $300 spinal tap bill looming over my head.  I finally decided to stay.

I wasn't ready.
I wasn't ready for a physical by a strange doctor.
I wasn't ready for a physical by a strange doctor who was a male.

Why the silence for the past week?  No Facebook or blogging or reaching out?  Because I feel dirty.  I still feel dirty.  I am drowning in the filth of me.  SIGH.

I do not really want to talk to anyone because I do not believe anyone will understand and I just do not want to hear something that is the equivalent of "if you just go to bed earlier...."  And, frankly, I just do not want to hear about how Jesus was ashamed, too.  This isn't even about shame.  That will come later.  This is about being dirty.  

It doesn't have to make sense to you.  It does to me.  Although I will say that I read recently someone talking about how child sexual abuse survivors are not revisiting their past (and just need to stop doing that), but that their past is their present, is in their present with them.  In a way, it is like that PTSD quote that I posted everywhere that explained that the anxiety is about something that happened in the past, but something that is still happening in the present.  In both instances, the idea is that the memories (or flashbacks) are being relived instead of merely remembered.  Relived with all the trauma happening again and again and again.

I wasn't ready for a head-to-toe physical by a male doctor.

I don't know where to go from here, from this place of utter filth.  It didn't help that the doctor's attempt to put me at ease came across as person and not professional at all, given what he was saying.  And it felt like the same sort of calming words abusers use to try to make a terrible experience somehow better.  As if they are doing you this favor and you ought to be grateful for the comfort no matter what is happening to your body.

I wasn't ready.
At all.

And I feel dirty.
I am dirty.

Day three...

For much of my life, I have stood like a flamingo, one leg tucked up and angled out.  I am not sure why.  I just did.  I do not stand like that anymore, but I do sleep that way.  I lie on my side, but angled forward, with one leg out and one tucked up, the sole of my foot flat against my thigh.  Funny that I noticed how much more comforted I feel when my legs are that way in bed than not.

Is that a weird thing to note?

Day Three Agenda:

Wake
Take Amos out
Treadmill
Cool down
Shower
Dentist
Take Amos out
Nap
Feed Amos
Make dinner
Rest
Church
Blog
Nap
Putter
Bed

Yes, I made it to church.  Thankfully.  It has been such an incredibly blessing to have the Word of the Lord in my ears again and Christ' body and blood in my own.  I am thankful that Becky helped me to gird my loins enough to try to find a church where I could ... well, where I might could belong.  And one that is more accessible!  My goodness are churches lacking in accessibility!!

My new GP is Catholic and talks about her faith some.  She's involved in furthering medical ethics and oft tells me about the conferences that she attends.  Because they are Catholic ones, there is usually a day or at least a time of silence and reflection accompanying the workshops.  She works insanely long hours, so her continuing education and ethics gatherings are pretty much the only non-work time in her life.

She helped me out with a couple of things, so as a thank you, I bought her a copy of Bonhoeffer's book on the Psalter.  It is small and easy to cart around, but she's so busy she hasn't read much!  Therefore, I got the idea to read her a little bit and a psalm at the end of my monthly appointments.  I'll give you one guess as the to first psalm I read to her!

I dearly and deeply miss having anyone to talk Bible stuff with on a regular basis.  I know that she reads hers and spends time in the Psalter as do I.  My appointments are usually on Friday afternoons, being the last one of the day.  She told me once that she looks forward to my appointments because she will learn something.  [That's the mixed blessing of being a complex patient.]  I thought, Why not learn something about the Psalter, too?

At least it is a way to encourage another person.  I try hard to encourage others in my life, but I feel as if my life has become ALL ABOUT ME and I am sorely lacking in the encouraging department.

But reading my GP from and about the Psalter is a way of thanking her for the incredible amount of time and effort she takes in trying to help me.  My appointments are 60-90 minutes long, and she oft ends up studying something about my condition(s) in between them.  She also writes me on the messaging system during the month to check in or respond to my questions.  I am blessed by her.

I think that that is what I wish I could do, if I am to have this small, small life of the chronically ill.  I wish that I could go places and read folk from the Psalter and Bonhoeffer's book.  You know, just be the Psalter lady.  I really do believe that everything in this life is in the prayers of the Psalter.  It isn't necessary to come up with your own words to comfort or speak to someone.  Just read.  Heck, even if you have an angry, bitter person, well, then, there is still a psalm for him/her.

It never ceases to awe me just how much God demonstrates that we are intimately known as I read through the psalms.  And I love, love, LOVE when someone else revels in them.

There is this article about depression:  Pastoring Amid Depression.  In it, the author writes:

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.

Is that not just lovely?

To realize that we are known, truly known, by our Creator, even in our darkest moments, is one of the greatest comforts there is.  Life is not all leaping and singing songs of praise.  Sometimes it is stumbling and groaning deep despair.  From joy to sorrow and everything in between, there is a prayer to pray, one that Jesus has and is praying, in the Psalter.

Just like the Prego slogan of the 80s:  "Prego. It's in there!"

The Psalter.  It's in there!

Day two...

Day Two is over!  Well, the evening has not really begun, but my day is over.  And I am back to resting mode.

I woke early

~~~~

Okay.  So there is an example.  I started writing at 6:48 PM.  I got distracted and it is now 10:04 PM. But what did I do?  Well, I worried more about money and medical expenses and spent the time on my Number Crunching spreadsheet, my budget, my checkbook register program, and my expense projections for the end of this year through 2019.

That's what I do.  Crunch numbers for hours on end, hoping that there is some way to make 2 + 2 = 5, ten times over.  SIGH.

Anyway, I woke early enough to get the treadmill torture out of the way before my appointment.  That has been my goal:  wake, take Amos outside, treadmill torture.  I have a more exhausting day that way, but that way I will not end up at the end of the day still searching for the energy to walk on the treadmill.  Sometimes, I was dragging myself down to the basement at 11:55 PM just to get the time in on my Fitbit before the date changed.  Silly Myrtle.

I sat with Amos as I cooled down and then showered.  That has been a new goal of mine: showering daily.

I got to the point where I was relying more on washcloths and baby wipes than I was my shower.  Showering is so difficult that I started putting it off, going two days and then three and then even four in between showers!  I mean, a hot washcloth with a bit of soap can go a long way, but it is not the same as a shower.

I was talking with my sister about things and showering came up.  As she talked, I realized that I was tired of being a little bit sticky, of feeling like a gross and disgusting person.  For the very first time, I got in the shower without washing my hair.  That is the hardest part, since having my arms raised make my heart work harder and standing with my eyes closed makes remaining upright a difficult task.  So, now, I shower every day and wash my hair (mostly) every other day.  On the non-hair-washing days, the shower takes just 5 minutes.  It is still hard work and my pacemaker has to kick in some help, but I no longer feel so gross and disgusting ... at least from a physically clean standpoint.

I showered early to change things up, because Amos is becoming more and more astute in sussing out when it is that I will be leaving the house.  His dislike of my departure has reached new heights.  I showered early and still dressed in my doctor appointment outfit, but then I went to the sofa and had an hour of Amos time before the alarm went off for my appointment.

There has been so very much miscommunication about the MRI that I could scream.  I am not sure where we are at, because a week ago my cardiologist told my neurologist that he would arrange the MRI and no one has contacted me.  In a nutshell, she very much needs to look at my brain before deciding between IVIG therapy and MS medications.

There is the pesky little problem of my kidneys.  But it takes so very long to get an appointment, that I am hoping I can drink enough water to raise my numbers, especially since I am off of Celebrex at the moment.  The nurse today said I was a diabetic.  I am not!  I have crap kidneys because of autoimmune disease, not because of diabetes.

On the morrow, I am going to dive into the MRI mess and see if I can just call scheduling myself.  I'd really like to get the MRI on the books and have a look see into my brain.  I'd rather not look at my cervical spine, because I know that it is a bit of a mess.  But since I have no pain from it, I am patently ignoring the issue of bone spurs and whatnot.

Day Three is going to be tricky because I will not have time to torture myself before the dentist appointment and tomorrow is a Wednesday, which means it is a church day.  I am not sure I can go to the dentist, walk on the treadmill, and go to church.  I want to do all three.  I need to do all three.  It will be a long day in the middle of a long week.

Then comes Thursday with the impossibly early schedule.

Gosh, just thinking about what I still need to do is exhausting!  The dishwasher has been crying out to be unloaded for two days.  I've avoiding engaging with it by eating things that do not need dishes.  I do think that tomorrow I shall have to bite the bullet and get it unloaded.

Tomorrow on my long day in the middle of a long week.
SIGH.

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.

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.

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.

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.

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.

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.

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????