Monday, October 10, 2016


I have been struggling, clearly, as this is the longest silence on my rememberer blog.  Most of the time, I just don't know what to write.  And much of the time I am too exhausted to do the work of writing, which guts me, since writing used to be to me as easy as breathing.  Struggling so much so that I started this entry four days ago.  SIGH.

When I am upset and ill and weak, I am most desirous to DO SOMETHING.  I was so worried before the surgery that I took it out on the rather ugly, chipped and stained old bookshelf to the left.  I painted the same GREEN of the stairs and the utility closet door.  But after the surgery ... after what I heard ... I still needed to DO SOMETHING.

Firewood Man blesses me in so many ways.  This time, he helped me DO SOMETHING to my basement.  I have disliked those wooden shelves (actually crates) for as long as I have owned this house.  Even though I used them for storage, I disliked them.

At first, I had the idea of getting rid of them and adding cabinets.  Only cabinets cost money, where as down-sizing is free.  Even though I doubted I could truly downsize the need for the shelves away, I managed to do just that!  I reorganized the utility closet, downsizing a bit there, and utilized the space I freed up there to keep what I wanted easy access to, such as mailing supplies and spare lightbulbs.  I moved six boxes to the attic, things I am not ready to just dispose of, but nothing I need at hand.

And then I begged and begged Firewood Man to come fetch the five crates, because I was not patient enough for them to sell on Craigslist.  He sold them, easily.  And I was happy for him to have the money.

Behind the crates was a bit of a surprise!  Perhaps a lost Jackson Pollock?  So, I had to prime the wall twice and then paint it with two coats before it was ready.

Anyone who is doing home improvement knows that if you put in flooring next to something you are not going to move for that flooring, then you need to purchase extra flooring just in case.  I KNOW that and yet I failed to buy extras.  So, I had to go searching for a best match to my now discontinued flooring (surprised it was already discontinued).  I am pleased with the match, even though it is more vibrant than the original flooring and has wider grout lines.  It is a far better match than I had hoped for.

Mother suggested that I paint the food shelves, too.  This way, the space would be tied together better.  I liked the idea, but not so much the actual painting.  Still, the end result is rather pleasing.  Firewood Man came over when everything was dry to secure the shelves to the wall since, being backless, they were a bit wibbly wobbly and had previously been screwed into the crate shelves.

Mother also suggested that I moved the table from the back wall over to between the shelves.  I was doubtful of the move, but she is never wrong when it comes to design and space.  Firewood Man also rehung my diplomas.  One day, I shall have the electrician come and put in another plug.  It looks a bit odd to be using the one that is where the table used to be.  But even with that small flaw I LOVE, LOVE, LOVE the space now.

Visual rest, which I have written about muchly, actually physically affects the body.  It is not just rest for your eyes, but for your whole being.  Now that they are gone, I realize that I found those wooden crates and wall-to-wall shelves a bit oppressive to me.  And depressive.  The space is now open and inviting and most useful.  Each time I come down the stairs I am struck anew at how much more restful and peaceful the room is.

I will also say that, whilst I still LOATHE using the recumbent bike since it is so torturous, doing so is far more pleasant now than it was with it squeezed between the table and the privacy screen for the half bath.

Forty dollars of flooring and a few dollars of hardware and my basement was transformed.  That definitely counts as DOING SOMETHING in my book.  And, since I worked more slowly than I ever have, the job was a success because I did not terribly exhaust myself in the process.

Why the need to DO SOMETHING?

I told many folk that I doubted the swallowing problems were wholly the Shatzki's Ring, for they happened intermittently and are worse when I am most tired.  Even so, when I awoke from the anesthesia, I half-quipped, "Did you fix my swallowing problem?"  The doctor replied, "I believe it is a disruption to the swallowing process, the nerves malfunctioning, and so there is nothing we can do about that."

Such an answer is pretty much all you hear when you have Dysautonomia, but hearing a doctor say them to you, even when you say them to others, is still rather discouraging.  Devastating, really.  SIGH.

I am a hare at the table, rather than a tortoise.  So, I have started to try and eat slower.  But, more than that, I have also started trying to remember to take smaller bites and chew longer.  None of that helps my nerves, but it does help with a weaker swallowing function.  Somewhat.

Although I find it super annoying, I have also tried to start swallowing each pill individually, so that the ones that get hung up can be dislodged with the liquid with the subsequent pill.  I have had two more pills added, but I am hopeful that largest of the white capsules will be dropped off in December.

If you had told me that I would be a vitamin and supplement and prescription ... junkie ... I would have bust a gut laughing.  And yet I have three doctors, now, who are paring vitamin/supplements with traditional medicine.  I still marvel at just how much the Theanine has helped with the neurological anxiety.  It has turned off this ... switch ... inside me.  Or another way of describing it is that I was able to let go of the death grip that I had on all the pieces of myself.  My neighbor started taking it and oft speaks of how it is helping her.  The Theanine alone has helped me to be more open to trying things.

So, for example, I now take Riboflavin B2 to try and help with the nerve pain, since I have asked to be tapered back off the gabapentin given the enormous weight gain it has caused.  My GP also wants me to try acupuncture.  I cannot afford that right now, but I will go at least once.  SIGH.

The difficult part of this photo, for me, is that, in the past five weeks, I have messed up my medications three times.  Messed up filling up my boxes.  For example, I missed my thyroid medication for five days.  Another time I missed my blood pressure medication for a week.  That I am now repeatedly messing up my meds is another devastating sign of the changes in my body, the failings of my mind.

Life has changed.  So much.  I have been ever so much more exhausted, sleeping, in breaks, about 12 hours a day.  The past few days, I have been battling constant pre-syncope.  Today, I did accomplish several tasks, but I did so only by lying on the floor with my legs up against the wall in between getting up and doing laundry and bathing Amos and brewing tea and making deviled eggs and mixing up Gatorade.  I face so much that I just wasn't ready to embrace another bodily malfunction, to find myself struggling to adapt in yet another way.  SIGH.

I hate that I have missed so much of my life.  Missed recording it ... saving it.  I have wondered if I could try to recap over several entries, but I am not certain I can.  And I don't want to set myself up for more failure by not being able to do so.  I just wanted to at least start writing again, no matter how difficult it is, lest I disappear forever.

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