Tuesday, October 16, 2018

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.

Monday, October 15, 2018

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.

Sunday, October 14, 2018

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

Saturday, October 13, 2018

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.

Friday, October 12, 2018

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.

Thursday, October 11, 2018

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!


Tuesday, October 09, 2018

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.