Thursday, May 31, 2018

What no one wants to hear...

I spent Sunday and Monday working on building up my larder again, which always makes me feel as if I accomplished something worthwhile.  It is rather amazing to me this way of cooking I have learned.  I mean, learning to cook is the only thing in my life that is moving forward.  The rest of me is falling back, losing ground, fading away.

With all the things that I have learned to cook, I have more than a dozen "staples" now that I like to keep on hand as my main meals.  When the mason jar drawer becomes full, I get out the pots and start cooking.  Usually, I just cook what I am hankering for, but this time I took an inventory of the basement freezer to see which of my staples were low.  That changed my cooking agenda and leaves me with a full freezer of my favorites with 14 different options from which to choose.

It was nice have forward progress for once.

Tuesday ... Tuesday I spent trying to say something first in therapy and second to a friend.  But the words I was speaking did not seem to translate from my brain to their ears.  I have been struggling mightily ever since the colonoscopy, the visit to the podiatrist, and the exchange with the neurologist's nurse.  All three instances of really crappy medical care.  But instances that drive home the need to be ... compliant and quiet as a patient.  Anyone who needs more, needs care beyond that which is not already scheduled and practiced and normal is someone to be crushed.  Crushed by callousness.  Crushed by cruelty.  Crushed by being crazy-labled.

Shut up.  Be still.  Wait until it is over.

More and more, I feel as if that is really what I need to do in the medical world and out.  That I should just ... live that way.  That crushes me.

So, of course, I thought about writing about what no one wants to hear as a means of turning aside my thoughts about the Sanctuary.  The torment and torture of my bowels.  Because I cannot escape them.  And I deal with them daily.  And the wretchedness and ... the shame.  Shame from the part of my body torturing and tormenting me.  Shame from where I am whilst being torment and torture.

I need to poop and I scream from the pain of my pudendal nerve flaring.
I need to poop and I struggle to not faint from the trigger of pain.
I need to poop and I battle nausea from pressure against my vagus nerve.
I need to poop and I vomit from pressure against my vagus nerve.
I need to poop and I battle pre-syncope from pressure against my vagus nerve.
I need to poop and I faint from pressure against my vagus nerve.
I need to poop and I grow weak from pressure against my vagus nerve.
I need to poop and I tremble and shake from pressure against my vagus nerve.
I poop and I scream from the pain of my flesh tearing.
I poop and I scream from the pain of my pudendal nerve flaring.
I poop and I struggle to not faint from the trigger of pain.
I poop and I battle nausea from pressure against my vagus nerve.
I poop and I vomit from pressure against my vagus nerve.
I poop and I battle pre-syncope from pressure against my vagus nerve.
I poop and I faint from pressure against my vagus nerve.
I poop and I grow weak from pressure against my vagus nerve.
I poop and I tremble and shake from pressure against my vagus nerve.

I take five different things just to try to poop every day, because my bowels are so very slow.  This leaves me feeling crazy, because ... well ... who would want to poop, when pooping causes such wretchedness in the body? 

Because my bowels are so very slow, the need to poop can start hours before the act can happen.  That means I am ill for hours.

When I do not manage to go, then I am stuck with the agony of constipation.  A while back, I went 19 days before I finally tried a medication that tipped me over into diarrhea for more than a day.  Violent diarrhea.

And then there is the gas from both a medication I take and from the slow bowels.  The pressure of the gas is enough to trigger pain, nausea, weakness, fainting, trembling, and shaking.  Sometimes, when it is particularly bad, I will mash on my abdomen to try to move the gas along.  But I can become so bloated I look as if I am expecting a baby and the pain of it leaves me writhing on the bathroom floor or flailing about in my bed as if I were a beached whale.

Daily, I deal with wretchedness in my body because of my bowels.
Wretchedness and shame and silence.

It's one battle amongst many when it comes to my body.
A lonely battle.
A shameful battle.
A silent battle.
A weary, dispiriting battle.

Sunday, May 27, 2018

If only...

I've been too afraid to open an email from a dear friend of mine. Or rather I have been too afraid to open her attachment. If I were able to truly trust anyone with my ... being ... it would be my dear friend Mary. I know that she will be gentle and always takes such care with her words and the ideas she would like for me to consider lest they tumble me off into despair or find me spiraling back into the clutches of my past. I even really like the idea of coming up with a collection of mantras for me to cling to when my mind is troubled over specific things. Still, I am afraid to see her first draft. To see the words she might have for me.

However, I did open a bible verse that she sent to me. Being ever so sweet, Mary tried to send it in a lovely font for me. However, it is not one I own and so was opened in the harsh font of Ariel. Font aside, I just loved the verse:

“While we are still in this tent we groan, being burdened—not that we would be unclothed, but that we would be further clothed, so that what is mortal may be swallowed up by life.” ~2 Corinthians 5:4

Now, here's the thing.  This is an example of something that I am no longer able to read.  It is the chief reason why I primarily only re-read now.  For I have been an avid reader since I was knee high to a grasshopper.  That I am losing my ability to comprehend what I am reading grieves my very soul.  I can hardly touch the thought.  So, I avoid it.

More and more, though, I come across things that I struggle to comprehend.  I look at this verse and read the first bit and think ... okay ... and then the next bit and think ... wait ... and then the third bit and think ... what? ... the bits are all confusing and seemingly unrelated and not a thought that can be built from beginning to end.  But I know, in my head, that they can be.  And that I used to be able to do so.  And that frustrates me, which makes the whole situation all the worse.

But I do know that this is surely a very Myrtle verse that Mary found for me.  And I am certain that there is great comfort in it for me to receive.  So, I loved it.

If only I could comprehend the words.  

Saturday, May 26, 2018


Every time I look at the haven's fencing, I grow giddy.  However, I have spent the day doing nothing besides watering the pots on the three porches and the new plantings.  And I only did that because we are still in the throes of August-like weather.

I am very, very, very weary from sealing the fencing.
Weary, but giddy.

Looking ahead, I realized that I have a long week ahead of me, with appointments Tuesday through Friday and groceries needing fetching on Monday.  I am not sure how that happened, since I vowed, after April, never to schedule myself like that again.  And, the following week, I have another three appointments, chief amongst them being the MRI of my brain to see if there is an obvious cause for the constant shocking in my hands.  Day in.  Day out.  All day long.  Two hundred and twenty days now of said body torture.  SIGH.  And, of concern, that following week will also be the next round of testing on my lungs to see if the round of high dose steroids is helping.

I am already exhausted just thinking about it.
Exhausted, but giddy.

Friday, May 25, 2018

What I missed...

I've spent the past three days (today included) torturing myself by sealing the wood panels that Firewood Man built for me out in my haven.  I grossly underestimated how long it would take for me to do this homeowner's project and how much sealer I would need.  I know raw wood soaks it up in astounding ways, but I didn't remember that.  So, I had to take time out to fetch more, which is exhausting for me.

Every single time I lay eyes upon the fencing Firewood Man created for me, I am amazing anew at what he did for me.  The cockles of my heart are warmed and my spirit refreshed.  Since I pass by them turning into the garage, I am always cheered coming home from my appointments.

But, oh my!!

My father taught me to use Flood's CWF sealer.  I have always used clear, because it leaves wood a rich, wet sort of look that I have found attractive.  However, I had several folk suggest that I stain the wood a color, most specifically GREEN. I thought about that, but I am not sure I really understand true stain colors and how they work.  However, I knew that CWF comes in a color called "honey gold" and I have been thinking on using that.  Finally, at the moment of purchase, I chose it.  And, I must say, that the end result really did except my expectations.

My haven just got that much prettier!
And peaceful.
And full of solace.

I have held off really adding flowers and plants to my haven, because I haven't been sure how I wanted to do so.  I mean, I am trying to not crowd the place.  And the fountain and the tulip window and the wind chimes all add a specific element that I have enjoyed.  I mean, seriously, now that the fountain is properly gurgling, I have soaked up the magic of the creation of water nearly every second that I have been out there.  I wanted the growing things to also be as good as a fit as those three elements have been.

Whilst I was working, I hung a basket from the tree in a half dozen spots.  I liked none of them.  And the fencing is so beautiful to me, I am reluctant to put a hanger on one or more of the posts.  So, I thought more about my options.  When I was fetching annuals (and on my failed searches for thyme), I spotted some really tall ceramic planters.  I think ... think, mind you ... that I would like to put a tall ceramic planter in each of the corners.  And, wild as it seems, I might just end up putting chives in them to have both flowers and herbs!  [Someone brought me a nice patch of chives on Thursday.]

The planters would need to be a color that complements the pots of my fountain.  And, I think, maybe a squarish sort of shape, so that they don't compete with the fountain in the space.  In any case, I am not certain, but I do think that that might be the way to finish off my haven.  At least, I have been thinking that before I've gone back to look at the pots I saw to see if a second look speaks further to me.

Other than tending to my fence (in four years time someone else is going to have to do the re-sealing), I also tried a new compound butter recipe:  Roasted Garlic and Bell Pepper Balsamic Butter.  Oh my goodness!  This is just plain amazing!  Who would have thunk you could put balsamic vinegar in butter and come out with something super tasty!!  I did make a significant change to the recipe:  I swapped basil paste for the parsley.  I think that it compliments the other ingredients better, especially the roasted red pepper.

I've shared it with my realtor and some neighbors I am trying to get to know better.  Both found it it be exceedingly tasty.  I do not disagree.  In fact, on the morrow, I plan to make another batch so that I can have more for myself, for I still plan to bring the other small portions to my doctors and my therapist.  This is as much a keeper as the Orange Cranberry Butter.  Or course, the Herbed Goat Cheese Butter is pretty spectacular atop steak.  My realtor and her husband had me make them up a double batch to serve at a dinner party atop some London Broil.  She said her guests raved over it.

I am tickled that others are enjoying the butters that I am enjoying exploring.

Now that my labors are quit, I have gone back to rest (and recovery) mode.  I have been shaking for hours and hours now, and my pacemaker is still keeping my heart rate high.  So, I do not feel as if I am resting, but I am.  Well, resting and watching a bit of television.  In this case, I'm watching the Roku channel, looking at the movies that are leaving.  I first watched "The Queen," which was not what I expected and caught me off guard.  So, after that, I thought I would watch "Dirty Harry."

I know that my father introduced me to "Dirty Harry," but I do not remember watching the movies with him.  I wish that I could.  Watching made me sad, for I had a thought that overwhelmed me:

I spent so much time avoiding the conversation that I could never have with my father that I missed the conversations that I could have had.

I feel as if I have been punched in the gut, hunched over and gasping for breath.  It is hard to believe that he has been gone now for five years.  It feels as if he died just yesterday.  That is, when I dare touch that part of me ... which is very, very, very rarely.  So, the idea of what I missed with him is overwhelming.

This evening, I have been struggling with loneliness more so than usual.  [I am lonely every day now.]  I was so busy looking at the forecast to find two consecutive days in which I could seal the fencing (foolishly thinking that I might only need one), I didn't realize that I had come up against Memorial Day.

For me, I often struggle to know what day of the week it is.  I am not good with time, nor do I mark the passing of the days well.  Since I am no longer working and am so socially isolated, I simply do not track weekends or holidays the way that I used to do so.  You could say that every day is a weekend, that everyday day is a holiday ... except for the fainting and the nausea and the neuropathy and the migraines and all the other wretchedness.  But, today, with all the family stuff I started to see on social media, it hit me.  Once more, when the rest of the country is gathering with family and friends (okay ... not the whole country ... it just feels that way) I remain alone.

Alone with the thought of what I missed with my dad.

So, I am giving thanks for the color honey gold and for labor finally ending and for tasty butter and for fluffy white puppy dogs, who are getting ever so much better at comforting.

Tuesday, May 22, 2018

Not felled...

I've been working on tending to things in the yard. I thought that I had just three things left, but I somehow had several more tasks that needed done as well.  And, in doing them, I have put my working, resting, working, resting plan in jeopardy.  For the fence panels in my haven need to be sealed and tomorrow and Thursday is the first real opportunity that I have.

However, I did knock everything else off my list (and the extras) this evening, finishing by 9:00, which is well before my usual midnight gardening!  I got the remaining annuals planted (though they look so very dweeby in a circle around my ornamental magnolia I might rearrange them), the stray sedum in the front bed relocated, the bushes in the front bed fertilized, the pavers lining the front bed raised and straightened, some ornamental thyme relocated, a row of coral bells that was four plants is now a more balanced row of five, and three spots that I had not yet gotten to weed are now cleared out again.  In a nutshell, other than maybe moving the marigolds again before they get started, I do not need to do anything other than weeding for the rest of the growing season.

Except for that pesky sealing.

I adore tending wood.  All wood.  It is just that I am not capable of standing the way that I will need to be standing to get the fence panels done.  Alas, I am slightly dreading the morrow.  I dread not being able to do the work needing doing in my haven, not being able to be a responsible homeowner. For I know that that time is coming.

And then what will happen to me?

But that time is not now.  Now is a time when I have done the best job I've ever done in trying to manage my strength and tend to the things before me as I am able without punishing my body and leaving myself felled for days or even weeks.  Now that is a most remarkable accomplishment on my part.

Monday, May 21, 2018

The mantra...

Shut up.  Be still.  Wait until it is over.

That was the mantra that saved me when I was little.  It is the mantra that has supported me and bound me my entire adult life.  And it is the mantra that I though I was trying to finally escape.

But the past few weeks have me believing that it is my only hope for ... for ... for successful medical care.  Because, you know, for the most part, medical personnel just want to be a slab of meat.  If that is harsh, I believe it is true.  Of course, the nicer way might be to say that they want compliant patients.  That means patients who do what they are told, when they are told, and who fit the mold.  PTSD patients do not fit the mold.  SIGH.

Thinking about needing to take up and embrace that mantra again with regard to medical care is crushing me.

I tried to speak of this with my sister, but did not get all that far.  However, she did say something sweet.  She said that she hoped that, one day, I could see that the way others treat me is not a reflection of me, but of them.  That what happened with the colonoscopy, with the podiatrist, and with the nurse at the neurologist was not about me, but about them.  My mind simply cannot grasp that.  After all, they are responding to me, treating me the way that they did.

I worked so very hard to prepare for the colonoscopy.  I worked out what I needed to feel safe and to minimize triggers.  I was calmer than I usually am, perhaps because I felt more confident going in with having a PLAN.  Only it didn't help.  I was treated awfully.  And I still ended up with new flashbacks.

It was the dismissiveness, the absolute disregard for my person that is the hardest to bear.  Asking for a wheelchair to get to the bathroom and the abject refusal.  Two nurses with a death grip on my upper arms determined to frog-march me there themselves.  Because it was faster?  Because they didn't think that I needed a wheelchair?  They didn't even listen to my realtor, whom is also a nurse, asking for the same thing.  Even after my telling them that I do not like to be touched.  Even after knowing it is in my medical record, the PTSD, the sexual assault, the triggers.  They simply ignored me.

The nurse at the neurologist.  She was also so very dismissive of me.  She was aggressively rude about my meds list and then my answer to why I would need so many.  Her "so?" was really a "so what?" and it crushed me.  I wanted to leave right then and there, to escape what was sure to come.

Yes, the neurologist herself was a Godsend, in no uncertain terms.  And yet I fear going back.  I fear seeing her nurse again.  I fear what she will trigger within me.

My dear friend Mary posted this on her Facebook wall.  To me, it was as if she were posting it for me.    When I shared it with my therapist, she went ape over it.  Because, you see, it is perfect.  This meme really does speak the truth about PTSD anxiety.

I wrapped this meme around me like a piece of armor.  Someone understood.  My therapist got how profound it is to me to have and to be able to point to with others.  I was emboldened a bit.  And yet it all came to nothing.

Because I am nothing.

Shut up.  Be still.  Wait until it is over.

Wednesday, May 16, 2018

Puttering about out of doors...

I have been working on putting things together for the spring, though we skipped right to summer.  It is already stinkin' hot!  

On Mother's Day, I did the Spring Great Migration of the succulents that have been wintering in the solarium.  I wanted to do so earlier, but I couldn't find the tray that I use to carry a few pots at a time. Carrying things is difficult, but the amount of stairs needed in the migrations is what makes the task so very difficult for me.

I just so love the front porch filled with greenery!  I still need to get some six-packs of annuals to fill the two planters and three other pots.  Two others I think I will plant more succulents.  I do not wish to add to my bi-annual migration labor, but both pots are really too small for annuals and could be better served by succulents.  The solarium is crowded in the winter, but could bear just two more pots.  Both a floral ceramic parts.  And both are a bright spot on the porch.  So, I want to keep them and I want to convert them to permanent plants.

I also set up the fountain on the front porch.  Oh, man!  I was replacing the pump every year.  Now that I have wintered the pump indoors, I have not had to replace it for three years!  Imagine that!!  Anyway, the pump is installed and the water filled.  I don't have it gurgling at much as in the past, but I do enjoy sitting next to it.

I still need to power wash all the pollen off of the porch floor and clean up the piles of leaves still left from last fall.  And I have a few planters and pots that are awaiting some flowering annuals to bring  a color other than my beloved GREEN to the front porch.

On Saturday, I worked on cleaning up the tufts of grass here and there in my sidewalk pavers.  I do not want to put out killer stuff, because I also have the beginning of moss growing in between some of them.  So, I scooted along my back side the length of the sidewalk and the walking paths, cleaning them up.

I also worked on doing some weeding in my beds.  I cannot do much, but I did, for pride's sake, weed around the three azaleas that I planted last year.  I am very much looking forward to them blooming in all their glory.

The middle one is ahead of the other two, which bums me a bit.  I just don't understand why they are not blooming together.

The middle one is a creamy yellow, whilst the outer two are a brilliant orange.

By pride' sake, I mean that the plan for the bed beneath the rose of sharons, where all those seedlings pop up every year, is to blast it with weed killer.  But I wanted the area around the azaleas cleared now so that I can take photos of them without a million and one seedlings beneath them.

And on Monday (skipping around the days here) I worked on getting the fountain out in the haven set up again.  I had essentially planned on having to spend money on it this summer, but I was able to get it up and running and gurgling significantly without having to do so.  Instead, I changed out how I stack the two pots.  Last year, I followed several examples of stacked-pot fountains and used a plastic pot filled with drill holes so that water can circulate all around it.  This time, I stacked old bricks cross-hatched so that the top pot would be more level.

In order to create a column down the middle in which to drop the pump, I had to put the bricks further out that solid stability would allow.  So, the top pot and its tray of pebbles teeters a bit.  I wonder if it will hold its integrity if a heavy bird lands atop it to play in the water.

I am more and more and more pleased that it gurgles louder.  At night, in the deep stillness, I can hear the water on the back porch.  And I can see the higher curve of water from the kitchen window.  So, my cockles are warmed.

Today, after being accepted to another medical research study, I bought things for the yard, front porch, and raised bed.  I am trying, very hard, to finish of empty spots in the beds.  So, I purchased a hydrangea for the far end of Fern Bed 2.0.  That means I have hydrangea book ends for it!

Fern Bed 2.0 is coming along nicely in its second summer.  There was a spot over to the left of the middle of the bed where none of last year's transplants came back, so I relocated 3 more small ferns from the original fern bed.  That fern bed was started from a few stray ferns I found in my yard.  Now,  have two glorious collections of ferns and three magnificent specimens in the shade bed on the far side of the house.

I was too weary to walk around and take a better angled photo, but the few hostas I found have now been split and grown into four double clumps (eight plants).  I stuck the ferns in between them, not sure if I would like the look.  I still am not sure, but the ferns sure do love the location.  This bed is the epitome of low-maintenance.  I weed it about three times over the summer and that's it.  No watering.  No fretting.  Just joy that keeps on giving.

The other side of the house has been a bit of a failure.  It had that wretched snow-on-the-mountain stuff in there for several years.  Firewood Man finally killed it all off for me and I plant ajuga there, mostly transplanted plants, but I bought four of them, I think.  They all died.  SNIFF.  SNIFF.  The bed was mostly dead last year and I tried to ignore it.  After talking with a guy at Menard's, I decided on planting stella de ora.  It will stay proportional to the space and will re-bloom.  Plus, I have had good luck with the other daylilies I have ... though those all came with the house.

The rest of what I bought were herbs and two vegetables for the raised beds.  This year, the new vegetable I plan to try (to kill off most certainly) is eggplant.  I do not think I am going to do tomatoes again.  I still have sauce from last year and I don't have visitors to eat up the fresh tomatoes when I don't have enough for sauce.  Not being a tomato-eater, it really doesn't make sense to grow them.  However, they have been my best crop to date.  Go figure.

And I bought annuals for the pots on the front porch, the two pots in my haven, and the bulb bed.  I did so enjoy having some annuals in that bed last year.  I am rather bothered that my bulbs mostly did not bloom this year. I don't know if they are all petered out (does that happen with bulbs?????) or if I somehow killed them off (more likely).  I would like to add some bulbs next fall.  But, meanwhile, I think I would like to keep it the one annual spot in the yard.

Finally, I bought soil, peat moss, and compost manure.  I already realized that I had enough potting soil from last year to get the permanent plants into the ground.  I also might possibly have bought one too many bags of peat moss.  However, I won't know until I get all the six-packs planted.

You see, every year I fill those massive hummingbird planters with good potting soil. Those planters and the other pots I use for annuals.  And every following year I re-fill them because the soil is all dried out.  This year, I have decided to try and rejuvenate the soil in the pots with peat and compost manure and forego filling them up with potting soil over and over and over again.

Now, mind you, I know little about plants, but I suspect that the soil in pots gets tired more easily because it is watered more frequently.  So, maybe my plan will not work.  However, I still aim to try.  It will be cheaper in the long run.

I should admit that I am spending the medical research money before it arrives, as well as a check I know I will get for my birthday.  I just do not have money for the yard/raised beds/front porch.  I need to start a savings account for that (to also include the systemic fertilizer I put on my bushes and trees once a year), but I just don't see where that money will come from.  As in ... I don't have what I need!!  I did do me one of my beloved spread sheets based on what I spent (need to spend) this year and the total came out to roughly $15 a month I would need to save.  Impossible as that might be, it is good to have a goal.

Oh, yes, the other things that I bought were two cans of sealer and a brush for the panels in the haven.  They've been drying out all year, having been built with rather green wood.  Now, it is time to start doing the preservation and maintenance work on them.  Hopefully, I will only need to do it every other year.  And those panels will now be staggered with the porches, since I will NOT be doing them this year!  Just a good power washing (soon and very soon) and again in the fall.

With the need for sealer every year, I suppose I should round that savings goal up to $18 a month.  Spreadsheet adjusted.  Yard thoughts closed down for the day.

Although I am utterly exhausted from fetching prescriptions and yard/raised beds/front porch/haven panels things, I still need to get my time in on the treadmill.  Even though I will barely be able to stay on it, I have learned that if I skip a day, then I will skip 10 days ... or more.  It is so difficult for me that I start making excuses each day following the one that I miss.  And, well, if it is not in my Fitbit, then my exercise doesn't count!  So, I have to get myself down to the treadmill and started in the next 25 minutes!

Tuesday, May 15, 2018

Another loss...

Today, in therapy, there was this moment of pure comfort.  I was telling my therapist about my appointment with the pulmonologist and she spoke into pause of mine: "You must have been terrified hearing that."

She gets it.  She understands the reality of what I am facing, the enormity it could be.  This isn't a matter of worst case scenario, it is about understanding that I don't have an answer, but rather a treatment trial that, hopefully, will work.  But, because it might not, I have the monthly re-testing to closely monitor the situation.  The reality is, I have had a significant decline in function whilst awaiting my appointment due to, at this point and time, indeterminate cause.

But that bit of comfort came after learning that my therapist can no longer see me weekly.  She's been retired since the fall and cannot really manage all the folk she's trying to ... finish ... working just two days a week as she is doing.  All of us weeklies need to go to bi-weekly.  I get it, but ... how do I live this life without her help?


She has been helping me for 13 months now, eleven of them no longer charging me.  For each session, she receives a mere $20 from Medicare, which I am most certain goes to the practice of which she is a part.  So, every single week, I have marveled at her mercy and yet worried that it will come to an end.  Not her mercy, but that she's retired.

How long will she carry those of us she didn't want to abandon in her retirement?
Each and every week has been a blessing.
Each and every week brings me closer to the end.

And I am not ready.

The thing that she also gets is how completely and utterly overwhelmed I am each and every day.  She's watched me grow more ill over those 13 months.  She's seen me.  And she understands how Sjögren's has brought such an increase of suffering to my life.  The suffering and being overwhelmed all day long, every day is too much.  At times, I can shove it all far enough from me to savor the bits and pieces of my life that are filled with grace and peace and joy and not ... illness: Amos, cooking, my home, my haven.  At other times ... I struggle against drowning.

I really, really, really don't know how I will go from weekly help to bi-weekly.
I just don't.

But my dear friend Mary is formulating a plan.
I do sure love me a plan.
The mercy of friends.

Monday, May 14, 2018


I don't know how to write on here anymore. I mean, I long to write, but I find the task overwhelming for myriad reasons.  Chief amongst those is the constant grief I battle over the loss of my cognitive abilities, such as the ease with which I used to be able to write and write well.  But, too, is that what I want to write is so very ... mundane.  It is not that I started this blog to pontificate to the world.  It was a gift from a friend who thought I should write about my life.  But now ... what my life has become ... I just don't know how to write.

For example, I am trying to get two prescriptions from my doctor's office.  I had an appointment and discussed the change on one of them with my doctor.  I should have had her send it over right then and there.  But I knew I needed to check my other medications, so I told her I would send her a message with the mail order pharmacy order.

I did.
It was sent to Walmart.
I got it stopped and put back on my insurance account.
It was sent to the mail order pharmacy with an incorrect dosage.
I've been trying to stop that order for over an hour now.

I am alternately weeping my tearless anguish and battling rage at having to fight and fight and fight because people just cannot do their jobs properly.  I have been transferred all around the mail order pharmacy, at one point transferred over to my insurance company who then transferred me back to the mail order pharmacy, which put me back at the end of the queue.

My pacemaker has gone nuts.  My heart is working overtime to frighten me with palpitation antics.  I am weary in body and mind and spirit.  Lately, I have had to fight such terrible battles with medical care and they are battles that never should have come my way.

I sent a VERY clear message to my doctor, whom I KNOW remembers the conversation we had about the change to one of my medications on the 4th.  But a nurse tried to do the prescription and made a mistake because she didn't READ the message, she just clearly jumped on my chart where the local pharmacy always comes up first.  And when I finally got that straighten out and the claim taken off my insurance so that I could have it filled via the mail order pharmacy, the person who tried to send the order over clearly just looked at the name of the drug and did not READ the message that had the change.

But, lest you think that I was not clear in my message, here is how it started:

I said that I would send you a message with the prescriptions needing renewal at OptumRX. At this time, I need just two:

1. Gabapentin 600mg 3 times a day, 90-day supply, quantity 270
2. Acarbose, 50 mg, 6 times a day, 90-day supply, quantity 540

How much clearer could I get?  I even repeated the name of the pharmacy at the end of the message, along with the two drugs and their information again.

I am weary of having to follow up on EVERYTHING that I need done to ensure that it is done correctly.  There have been so very many mistakes with medical stuff, many of them prescriptions, and house stuff and utility stuff.  Those mistakes have cost me money that I simply do not have.  But they have also cost me the burden of great distress and angst and anguish as I battle to get the mistakes corrected.

For example, it took FOUR BLOOMING MONTHS to get my Internet service bill corrected after someone or some process changed my plan without consulting me.  FOUR BLOOMING MONTHS of having to pay more than I owe because if you do not pay the full amount, as I learned when I forgot to add the $1.99 fee increase into my January bill that was being paid autonomically via my bank, you get charged $9.00 late fee.  FINALLY, my June bill is the correct amount on the correct plan and I can start whittling down the credits that I fought and fought and fought to get back.  No one disputed that I was being charged wrongly, but giving customer credits is pretty much the LAST thing Frontier Communications wants to do.  I have wildly fast FIOS service, but oh did their computer system put me through the ringer.  Since the are the cheapest service available to me, since all I want is stand alone Internet, I had to stick out that FOUR BLOOMING MONTHS and fight and fight and fight to get back to where I was in December.


I am weary.  And I am so very sad at what is happening to my body.  I ache with sadness that sometimes overwhelms the chronic physical pain I endure daily.  I am so very sad and so very alone, the only one to face the distressing news as I go from specialist to specialist, the only one to fight those battles, the only one to ...  well ... the only one.

I am weary of worrying about money.  If not worrying, then counting out each and every penny that I am spending and trying to figure out a way to find the pennies that I need the next day, the next week, the next month.  My dear friend Becky and her husband have helped when they can, which overwhelms me.  And it grieves me as a reminder that my parents refused to help when it would barely be a blip on their financial radar.  In comparison, Becky and her beloved have sacrificially given to me in a way that sobers me and makes me think a lot about Jesus.

And then, of course, when I am devastated by my lung news and go out and buy Blue Bell ice cream, I feel guilty over spending so frivolously when I have absolutely no frivolously room in my financial life anymore.

Six months after the distressing high resolution chest CT, I got in to see a most wonderful, delightful, nerdy, attentive pulmonologist.  She promptly ordered more tests and worked me into her schedule after them.  My lung function has continued to deteriorate, although the exact reason she is not yet ready to say definitively, since if it is Sjögren's, as suspected, that's a difficult diagnosis.  For now, it is treatment and testing and testing and testing.

I have started 35 days of steroids, to shock and awe the suspected inflammation that is restricting my ability to draw in oxygen.  Then, testing.  After another week or so, I will be starting four to six months of an antibiotic that is good with inflammation stuff.  The TERRIBLE news is that I cannot take Zofran with it.  I blanched at the news.  However, since I will be taking the antibiotic Monday, Wednesday, and Friday, she said that I could try using Zofran the other days of the week.  I sank at the news of having to battle the violent waves of nausea all on my own, but I was also grateful that she was willing to see if I could take the medication on the off days.  Of course, the interaction that would happen would involve my heart.


The medications, thankfully, are Tier 1 and Tier 2, so one cost $4 and the long-term one I got for free via the mail order pharmacy.  The testing ... well, that will be something doable, but rather difficult to pay for with my meager funds.  I do not know if it will include the extra test she did or the primary three lung-function tests that I've had twice now.  My share of those in the fall was $44.  I have not yet been able to see what the most recent testing will cost, despite my constant stalking of the claims section of my insurance website portal.  I am hoping it will be the same and that is the number I have to work in monthly to cover the testing until my lungs improve.

I'm not thinking about what will come next if they don't.

The neurologist appointment is a whole other blog entry ... maybe two or three ... but mostly it has boiled down in the financial department into hoping rather fervently not to have a definitive diagnosis on the constant shocking in my hands, because that would be the MS flaring once more and the recommended treatment of Rebif Rebidose.  Something that has a ~$62,000 co-pay on my part, since the manufacturer does not have any assistance programs for folk on federal or state medical plans.  I simply cannot take that treatment.

If it is not definitively MS, then the recommended treatment will be immunotherapy.  There is an excellent chance that that might be covered under Part B of Medicare and, thus, be something that I could swing.  The immunotherapy has an excellent chance at helping symptoms of dysautonomia, Sjögren's, as well as the neuropathy.  I am, thus, greatly looking forward to the possibly of helpful treatment.  But, too, I am afraid of hope, especially hope on the neurological front after having been told by three neurologists in Fort Wayne that there was no help for me to be had in this city ... that I needed to go to Mayo Clinic or Cleveland Clinic.  Yeah right ... like that is going to happen.  SIGH.

Anyway, I've been counting those pennies and trying to squeeze in more medical appointments in now six weeks than I have had in six months.  The money and the exhaustion and the ups and downs of them  (mostly downs) and expenses that I overlooked, such as using more gas in a month than I have in the past three months.  All of it.  I am weary and overwhelmed and alone.

And somewhere along the line I have become a patient whose life revolves around pain as much if not more so than revolving around a host of wretched symptoms that are atypical since they stem from autonomic and/or autoimmune dysfunction.

I live with pain.
I abhor pain.
I am trying to embrace pain.
I long to speak of it.
I long to never speak of it again.

I ache.
I stab.
I throb.
I pulse.
I shock.
I burn.
I sting.
I cramp.

My nerves hurts.
My muscles hurts.
My tendons hurts.
My brain hurts.
My bowels hurts.
My viscera hurts.
My lungs hurt.
My eyes hurts.
My throat hurts.
My skin hurts.
My hair hurts.
My joints hurts.
My iliac crest hurts.

Pain is always present.
Pain is inescapable.
Pain is discrete.
Pain is ineffable.

Pain makes me miserable.
Pain makes me weaker.
Pain isolates me.
Pain makes me a stranger to my own self.

I want to die, with my entire being, at least some point each and every day.

There is little that can be done.  There is no cure.  There is no escaping what my body has in store for me, pummeling me in body, mind, and spirit each and every day.  That is my present.  That is my future.  It is brutal. And it is devastating me.

How do I talk about that?  How do I write about that?