Wednesday, September 19, 2018

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!

Tuesday, September 18, 2018

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.

Monday, September 17, 2018

Day One


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, September 16, 2018

Catching up again...


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

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

Why not?

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

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

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

But it is just me.
SIGH.

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

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

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

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

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

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

And then there has been a whole lot more exhaustion.

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

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

This week is going to be brutal.

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

SIGH.

Tuesday, September 11, 2018

Ravaging...


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

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

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

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

SIGH.

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

Monday, September 10, 2018

Snoozing life away...


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

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

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

To me, this is not much of a life.

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

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

The silence is truly deafening.

Saturday, September 08, 2018

Medical news...


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

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

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

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

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

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

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

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

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

So, that was Tuesday's appointment.

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

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

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

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

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

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

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

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

And I'm still worried about my lungs.

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

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