Monday, December 10, 2018


I dreamt that I was in between places.  I often dream that.  I oft have dreams having to travel between Fort Wayne where I know that I have a house and places where I have tried to go back to graduate school.  Sometimes, I am working but not working because I know that I am on disability.  Sometimes, I am staying at Becky's grandparents cabin, although it is not in the mountains but on the water, a massive lake I believe.

Usually, I am staying in a dorm in school, but I will spend much of the dream trying to find my room.  When I am in my room, a large part of the dream is being alone in a room for multiple people.  When I was in graduate school, getting my master's, I stayed in a dorm.  My roommate would have sex whilst I was in the room.  When I protested about this, she moved out, so I was left alone.  I suppose that's the basis of the solitude.

When I am in school, all I am doing is failing classes.  I fail and fail and fail again, because I keep trying.  But I am too weary to get to most of my classes.  And my cognitive dysfunction keeps me from being able to complete my assignments.  Being in school is depressing and distressing, since I am lost much of the time.

But, in this dream, the storyline was new.  And it was one of those dreams where the story evolved and shifted.

I had been staying in a motel, where it was furnished with my own things.  It was a cheap motel, all that I could afford.  I am not sure why I left, but when I came back from wherever I was, I discovered that my room had been rented out again, because I had been gone longer than a month and had not paid my rent.  I was devastated.

I threw myself upon the mercy of the motel manager, begging her to understand my not remembering to pay.  I told her that she could just debit my bank account each month if only I could have another chance.

I am not sure why I was begging.  Perhaps because it was the cheapest place to stay.  I know that my rent was $320 a month.

She took pity on me and agreed to rent to me again, but she said she had someplace different in mind.  So, she took me out back and started walking across to this neighborhood across from the motel.  I found the neighborhood confusing and was puzzled as to where she was leading me.  It turns out that she owned an apartment in one of the buildings and was going to rent it to me.

When she opened the door, I stared in wonder.
It was a very Myrtle place.

The ceilings were massively high and trimmed with intricate crown moldings.  There were handmade glass windows that flooded the apartment with light.  The door and opening casings were all rich mahogany wood.  It was furnished with all antiques.  And off the bedroom was a wonderful old balcony with wrought iron chairs and a table.  I simply couldn't believe it could be a place for me to live and for the same amount.

But then, when I asked about moving out all the books and personal belongings still there, the woman turned rather hostile and said she was no longer certain that I was the person to live there.  It was wretched of me, highly offensive, to ask to remove the belongings.  Instead, I was to fit myself into whatever drawer space was left and to use whatever closet place deemed appropriate.  I groveled my way back into her good graces and sighed with relief once she had gone.

But fitting yourself into an apartment that is already full of possessions leaves one feeling rather insignificant.  And, being ill, not working leaves one feeling rather useless.  And living in a motel leaves one feeling rather lost.

In thinking about all the things that happened in the dream (too much and too distressing to write about), I realized just how lost that I have been feeling myself.  I am not sure if it is akin to the grief over all that I have lost and am losing in my life, with how Sjogren's and dysautonomia are wreaking havoc on my body.  But what I feel is not about loss.  It is being lost in this life.

I have no real place in this world.  My family is not really a family that has much to do with each other.  I am not working.  I do not have a circle of friends here in Fort Wayne.  And, as with what happened a little while ago, when the PTSD got really difficult for me and I disappeared from the world, my online friends did not reach out to me by phone or email or letter.  I was left alone with my upsettedness until I could make my way back to Facebook.

The holidays add much to feeling lost.  I dread the questions:  "What are you doing for Thanksgiving?"  "Do you have plans for Christmas?"  When you are home day in and day out, holidays and weekends have no meaning for you.  One day is the same as the next.  When I speak the truth, that I have no plans, that I am not going anywhere or doing anything, there is usually a push for more information, arising from a certainty that I would not merely be doing nothing.  Sometimes, I am tempted to say that I am going hiking in the Himalayas or some other tall tale.  But I know that that would eventually lead me back to the same place.

I am nothing.
I am nobody.
I have no place in this world.

Perhaps what I am trying to say is that I feel lost to humanity, in more ways than I can count.  One of those ways is belonging some place.

And I am oft lost in my mind.  I am confused.  I am not certain of what day it is or what I am supposed to be doing.  I have lost my anchor.  When I find it, the realization of where I was is difficult to bear.  And I feel lost in a different way.

If I could, I would rather be working.  I would rather be earning money, especially since money, or the lack thereof, rules my life these days.  But I would rather have a place to go Monday through Friday, to have set parameters that guide my daily existence.  But what few understand, there is absolutely no way that I could work.

I do not mean the fatigue and being ill and such.  The physical would preclude me from working, for certain.  However, I mean the mental fortitude that I just do not have.  And the cognition.

"Oh, but you are still so smart!" I hear nearly every darn time I try to talk about the cognitive dysfunction I have.   And it is simply not the truth.  I can no longer understand parts of my own dissertation!  I struggle to understand when I am listening to something, such as a sermon.  I cannot listen to audio books or even short stories on the radio.  Trying to follow them is like trying to collect berries in a basket made from chicken wire.  The berries fall through the holes, no matter how hard I try to hold onto them.  Tossing new berries into the basket mean that berries I picked earlier are lost, for lack of a better word.

I only re-read books now.  I say that, but I do not believe that folk are listening to me or think about what that means to a lifelong voracious reader.  I have a series on my Kindle that is currently twelve books.  When I get to the end, I start right back over with the first book.  I only re-read because it is simply too distressing for me to be reading and realizing that I am not comprehending anything about the new story.

It is easier to try new things with television.  However, I still look up recaps or synopses of what I am watching to ensure that I comprehend it.  So, nothing really is new to me, given that I read those recaps before ever trying something new.  So, mostly I re-watch, too.  For example, right now, I am rewatching "The Brokenwood Mysteries", since the new fifth season is now available to stream.  I just started season three.  The new season is the fifth season.

I do not look my age, nor do I look ill.  Unless I am searching for a word, I do not sound like someone who is cognitively compromised.  But I am.

I am middle aged.
I am ill.
And I have a brain that is failing.

I am also lost.

Sunday, December 09, 2018

More medical distress...

Five appointments in eight days was just too much for me.  It really was.  This is especially so because, these days, seeing specialists means getting distressing news.

I still have three more appointments next week, but one has changed.  I had to reschedule the cardiology appointment because, next Thursday, I am having a lung wash under anesthesia.  SIGH.

The thing is that my lungs have not gotten better after six months of treatment.  Some of my testing was slightly worse.  I had read the CT scan report and thought that it was okay, but it wasn't.  My pulmonologist said that we needed to shift our expectations for the treatment plan to not getting any worse.  You know ... shift from getting better to not getting worse.  That gutted me.

She had talked about having a lung biopsy, but that would require a three-day hospital stay.  Besides the cost of that, I don't have anyone to stay with Amos for three days.  There is no way that he can be boarded, sadly.  His anxiety is too high and his PTSD makes life so very hard for him.

A lung wash is a compromise.  Under anesthesia, saline will be injected into my lungs and then suctioned back out.  The saline is then analyzed for viruses and fungi.

You see, I cannot stay on prednisone long term.  With the lack of progress in getting better, I need to be transitioned to immunosuppressants.  If I have something brewing at the bottom of the lobes of my lungs, where the damage is seen on imaging, immunosuppressants will explode growth and put me in danger.  That is why she needed me to have a TB test, too.

Sjogren's Syndrome is attacking my body.  It is making my own immune system work against me.  So, immunosuppressants will turn down the effectiveness of my immune system.  The TB and malaria I have had in the past are still in my body.  So, taking immunosuppressants puts me at serious risk of battling those diseases again.

My pulmonologist talked about weighing the risks of my symptoms versus the risk of the medication to treat them.  This balancing act would be her main focus moving forward, depending on the outcome of the lung wash.  SIGH.

Distressing news Wednesday.
Then came Thursday.

The CT of my neck showed the likely reason for the constant shocking in my hands:  the nerve controlling my arms is being compressed in my neck.  So, the neurologist wants me to see a neurosurgeon.  I see the neurologist on Tuesday, but she wanted me to get scheduled as soon as possible.

The hope is that steroid injections would help the problem, but I could not afford regular injections.  At first, I thought at least one round would be diagnostic for me.  But my GP said that that would not necessarily be the case.  The injection could not be done in the right place and I still wouldn't know.  Or they might not help at all, but the compression could still be what is causing the constant shocking.  SIGH.

The appointment will cost $45, but I would like to go to have someone read the scans who better understands interventional options.  The surgeon chosen is recently trained in minimal approaches and microsurgery.  She was, apparently, a coup for Parkview to get.  And her husband, incidentally, works with my GP.  I plan to call for an appointment on Monday, as I asked the neurologist's nurse to wait to schedule anything with the two choices she gave me until I could talk with my GP.

I adore my GP.
She is amazing.
And she is very patient with my myriad complex conditions.

Still, it was an exhausting and distressing week for me.  And I have been trying to swallow that distressing news ever since.

Tuesday, December 04, 2018

Body parts...

One of the things that I have never understood is why men like to engage with little girls.

Something that you might not think about is how much that abuse suffered by the little girl can lead to her hating the parts of her body that were abused.  For me, a battle I have faced my entire life is with my breasts.  I mean, that area is not the only area of my body I loathe, but they have plagued me.

When I was little, I just couldn't understand why men liked them.  What they did to them confused me and made me feel filthy.  As I grew, my feelings intensified.  And it gutted me each time I endured abuse with them.

I finally have been losing weight.  It has been rather slow the first 11 months of torturing myself on the treadmill, but a medication I started in July has helped to kind of counteract the other medications causing weight gain or the metabolism issues or whatever has kept me so very rotund.

Last month, I started trying intermittent fasting.  Well, actually, I've tried it off and on for a while, having read some good research about intermittent fasting with diabetics, who struggle with weight loss.  For many reasons, I fit that group more than any other, even though I am not a diabetic.

There are two basic approaches:  1) fast certain days of the week and 2) fast certain hours in a day.  I tried the latter and didn't fair well.  I tried the former and didn't feel it was fitting me.  The problem with the fasting the past month, however, has been my increasing consumption of dessert.

Even before I started my no desert campaign, I decided to try the latter fasting once more.  I shifted around some of my medications and have been eating just 6 hours a day.  In four days without dessert, I have lost four pounds.  That is too fast, I believe, so I want to adjust what I am eating in the six hours (eat more), but I finally believe that I might get back to who I was anatomically before I started nerve pain medication.

Why start off this entry the way that I did if I am going to talk about weight?  Well, my body is changing.  Of late, I have noticed the biggest difference.  And that difference has been a trigger for me.  SIGH.

My abdomen was really large.  It still is, but very much less so.  I have lost 14 inches.  And, of late, my breasts have become more defined.  Beneath them, my abdomen is flat, instead of sticking out further than they do.

I haven't been able to understand why this change has been such trigger for me, buy my therapist explained it today.  For two years, I haven't had a shape that did anything to accentuate my body.  The curves I had made me look more like Santa or an elephant.

It took nearly the entire appointment today to get to the struggle.  I struggle to deal with my breasts and I struggle to talk about them.  Even the word breast is a trigger for me.  I hate  mine.  I hate  the memories attached to them.  I don't want them.

But my body now looks ... womanly ... again and I am not handling it well.

Understanding ... or rather having the thought that I haven't had to face that shape for a couple of years helps.  That make such perfect sense to me.  I have not had to think about my shape for a long while.  And during that time, I have been stirring my pot, so to speak, with therapy.  It is no wonder that I am struggling!

I cannot really explain how relieved I was to hear that explanation, to realize that, despite  my state, what I am thinking about this is normal.  Understandable.

I wish I could change my thoughts.  Some will, I hope, with therapy.  However, I do not believe that all of them will.  I do not enjoy the physicality of my body.  Pleasure is not pleasure to me.  It never has been.  And I want no part of it.

Nor do I want any part of my breasts.

When I was younger, my grandmother had a radical mastectomy.  I did not want her pain, but I envied her her body.  I was not scared at seeing her chest wall, at seeing the change from having a breast to not even having a layer of muscle.

I never spoke of my envy.  I did not believe anyone could ever understand, but my therapist did.  I mean, I just broached the subject.  I couldn't really talk about it.  But she got what I was trying to say. And I want to talk about it.

I do.

For I am frightened of the panic I feel whenever I catch a glance at my chest.  I see the defined curve that speaks of womanly parts and nausea rises to fill my being.  I am overcome with fear and desperation and the desire to escape.  But I cannot really escape my body.  I can.  And I oft think of that.  Only I am trying to shun such thoughts, to want to live.

Seeing those curves makes me want to die.

I do not want to relive the flashbacks I have of the abuse of my breasts.  I do not want to think about.  I do not want the reminder.  I could almost wish to gain back the 24 pounds that I have lost.  Almost.

It has been difficult and I desire prayer.  When such terrible fear and panic arises when I catch sight of my curves, I long to hear the Word, because I know it will comfort and calm me.  Only how do I admit to my friends or to my new pastor this problem that I am battling?

I am trapped in this body.
And I am alone with its horror to me.

Monday, December 03, 2018


[Written Sunday]

This is has been a terribly difficult day.  I've had five Pudendal Neuralgia flares!  This is the first time that I have had more than one in a day.  I believe all of them are from stool pressing on the nerve.

Yesterday, I started the day terribly ill, shaking, sweating, vomiting, and fainting.  At first, I thought it was because of the duloxetine.  It oft punishes me if I am late with taking it.  And I was late.  But, after a while, I realized it was a vasovagal response.  My enemy was stool, also, in that case.  Just a different nerve.

In both cases, all I can do is wait until the illness or the pain passes.

[Another flare started and I just couldn't write anymore.]

Today has been a day of failure, even though I am sure someone else might not see it that way.  My goal was to get my upgrade phone activated.  It is not.  Activated.  The only good news in this failure is that I can still use my original phone.

I am in a Catch-22 situation.  I ordered a phone.  Then I discovered I could get it cheaper through Best Buy, so I returned the first one (on the day I received it) and tried to order it through Best Buy.  Only the return had snafus in Sprint's system and my account was locked for four days.  Then, I was able to finish the order and was awaiting the new phone.  Sometime after that, someone put a debit on my account because my original phone was not returned.

The debit wasn't supposed to happen.
The debit is seemingly impossible to get off until the original phone is returned.
I need the original phone until the new one is activated.
The new one cannot be activated with a debit on my account.

The failure I haven't had yet is eating a dessert.  However, I must say that three days without dessert is a clear violation against my DNA.  I come from a long line of dessert eaters, a family dedicated to sweets with meals.  I am not ashamed of that.  I revel in one of the few commonalities I have with my family.  My genetic code has chocolate in it!

Still, discipline is good.
Even my chocolate-deprived cells of my body understand that.

I have let a third day go by without doing Amos' 30th foot treatment.  I need to keep them up every 10 days lest I have to go back to twice a week.  But I just get so weary thinking of torturing him for ten minutes.  Resisting his pitiful eyes until the treatment is done is near impossible.

So, I guess that is two failures and a success.

Saturday, December 01, 2018

Perhaps just...

So ...

[I'm sure you know where I am going with that.]

I am not sure that an entire month without dessert is really necessary.  Yes, I made it through today, even though, being one born and bred to dessert being a necessary part to any meal not breakfast, it was really, really, really tough on me.  But an entire month?

This isn't about sugar.  I don't need to watch my sugar.  Since I make most of my food from scratch, I know exactly how much sugar I am consuming.  My problem is that I totally lost my discipline with dessert.  Gone were the days where all I had was two mini Reese's peanut butter cups or a couple of cookies.  Instead of cutting, I dessert-ed away my overwhelming emotions.  I don't want to do either, but I most definitely do not want to eat through an entire bag of Smarties in a single week!

I was making such good progress with agonizingly slow, but steady weight loss, despite being on two drugs that cause weight gain, and that all went out of the window.  The fasting means that I can chow down on desserts and not gain weight, but chowing on desserts means not losing any weight.

I look in the mirror and I do not recognize the person I see.  I hate the redness in my face and ears.  But the massive weight gain just felled me.  I change my entire diet to deal with the gastroparesis and because I want to address the nerve pain I have to gain weight.  It's not fair!

I look in the mirror and I do not recognize the person I see.  I look in my head and I do not recognize the person I see.  I look at my life and I do not recognize the person I see.


So, perhaps just a week.  Perhaps just a week of no desserts and then see if I can get back to my usual sweet, but modest habits.  I admit that I am free with desserts when folk are visiting, being wicked and use them as an excuse to indulge.  But, alone, I am good, disciplined, reasonable.  Until October, when I fell off the deep end and unable to find a way back.  Despite my best efforts, desserts are not a way back.

Perhaps just a wee.
Or two.

Well, definitely I should be back to desserts by the 20th, because I am going to Penn Station with my realtor, who is picking me up for lunch since I will be camped out at Goodyear for at least half the day.  And, if you didn't know this already, Penn Station has the bestest chocolate chunk cookies in the known universe.  They are wildly wicked and vastly non-economical, but worth every calorie and penny and morsel.

Tonight, I thought to have a Dr Pepper, but then decided that would be cheating.  By that I mean, it would be trying to have a sweet.  I had a Granny Smith apple after I ate my dinner, my life-long love of an apple.  Fruit does not make up for a lack of a dessert.  Not when you have my heritage!

Friday, November 30, 2018

The impossible, the dream, and the Fluffernutter...

I shall declare the impossible:  I have been on such a sugar fest for reasons I only half understand that I looked at the calendar tonight and declared December to be a dessert free month.

Yes, I am serious.
Get it out of your system.

Even though I know this to be an impossible feat, being the daughter and granddaughter of two avowed chocoholics, who believe every lunch and dinner should come with dessert, I still aim to strive to gain back the discipline that I have enjoyed until ... well ... if you read here you know.  Why rehash what still distresses me when I think of it.

Needless to day, I had three desserts, including illegal Blue Bell, for dinner tonight.
A condemned woman's last meal.
Yes, desert is a meal.

[Abrupt change of topic.]

I dreamt last night that that Amos' ears fell off and that that was left was two bloody holes one the side of his head.  First one ear.  Then, as I was screaming, the other followed.  I awoke so terrified that I couldn't open my eyes.  I was absolutely convinced that my dream was real, that I was dreaming about what had happened, not about something that never happened.

I lay there for what seemed like forever, terrified, shaking, heart hammering.  Amos, being his new languidly lazy self, was rather slow to crawl his way out of the bed once he realized I was awake.  I couldn't bring my to touch him or open my eyes, even though he did not sound like a dog that had body parts falling off of him.  Finally, he gave up on his breathless whines to get me to out of bed and started smothering my face with his kisses.  Feeling the curls of his ears dragging across my cheeks, I gathered sufficient courage to open my eyes.  Whew!  Amos was just fine!

Some of my dreams are so very real that I cannot see them as dreams.  Sometimes I wake with sleep paralysis, which makes discerning between dream and wakefulness difficult.  And sometimes the terror (or shame) from my dream is so great that even though I know that I am awake and the dream was not real, I still am felled by it.

I could use prayer for the cessation of macabre thoughts about Amos. He is still with me, after all.  And tomorrow is his birthday.

Thursday, November 29, 2018

Christmas mailings...

I finished my Christmas cards tonight.  My goal was to get them done by December 1st, so I am a whole day early.  I worked on a spreadsheet of folk I wanted to sent cards to for a few weeks.  That is because it took me that long to remember everybody.  I also added columns for those to whom I wish to send packages.  Because, you know, I need me a plan for everything these days.

My small Christmas gift plan started last year, since I just don't have money for gifts.  In January, I started saving $10 a month for supplies, gifts, and postage.  My dear friend Becky helped me with my plan for gifts, and I have been slowly working on it.  I have everything ready to put the gifts together, wrap them, and get the bubble mailers ready to post.

That's the work for this weekend.

It bothers me that I don't really give gifts or treat others.  It bothers me that I mostly hoard every penny I have and all gifts and treats are really just dreams I have for myself.  Not really dreams, but desires.  Well, not really desires, but sometimes longings and sometimes just thoughts.

It is not untrue to say that I dislike being poor.  But it is also untrue for me to say that I haven't learned immensely from being so.  I wish I had applied myself to fiscal management the way that I have now back when I was working.  I was never a spendthrift, but I could have saved ever so much more money.  Now, it is all about scrimping and saving just to pay bills ... mostly medical and now dental.


I do worry that those whom will be receiving my small Christmas package, will scoff at my idea.  What I decided was that I wanted to share some of my favorite things.  Three being a very biblical number, I chose three things, but due to finances, I had to settle on two.

Is the sharing of my favorite things a selfish way to send gifts??