Just medicine...

Some days is it all I can do just to take my medicine.
I do not understand that.
At all.

Today, I was going to help my new friend from church continue to organize and downsize her home.  However, she came down with a cold.  Since I am on immunosuppressants, I cannot be around anyone who is ill.  So, my plans changed.

With my day freed up, I was going to catch up on my cooking and post some items to Facebook Marketplace to try to earn some money.  Sadly, I found myself in the donut hole this week.  I still have five medication yet to get this month and, most likely, another round of antibiotics since the current round of high-dose antibiotics I am on for my sinus infection are not quite resolving the problem.  However, all I did was manage to take my medication.

That was it.

Eight trips to the kitchen to swallow pills.
Two rounds of neublizing asthma meds.
Two rounds of neublizing sodium chloride.
Two rounds of nasal medication.
Four rounds of nasal treatments.
Two rounds of eye medication.
Four rounds of eye treatments.
Four rounds of brushing my teeth.
Two rounds of fluoride rinse.
One round of fluoride trays.

I ought to be able to do more.  I can do more.  But I have these days where I am so exhausted from the pain and nausea that I just sit in between the mediation "trips" and do nothing.  At all.

Well, I did go live on Facebook so that I could read the Bible to a friend in Japan.  She wanted to hear it the way that I read to my hospice patients.  It was my pleasure to do so, even if the video was round (and embarrassing) at the beginning trying to figure things out.  But that was nothing.  No meals for my larder.  No posting.  No paper work.  No working with Amos on commands he needs to know going out with me as my service dog.  No cleaning the house.  Not even putting together the stand to hold the television more safely on the small table.

Just medicine.
Just staving off all the ways my body is attacking itself.

SIGH.

As I awake...

AWK!  What is wrong with you, Myrtle?  UGH.  I AM going to get back to this.  I AM!  [Keep reminding me of that, will you please?]

I wrote this two days ago.  I should have posted here here as well.  It is so amazing to me, really, more and more as each days passes.  But, then, I've just jumped ahead of myself!

REJOICE WITH ME: I was talking with a friend tonight and thought it was probably time to post this. A month ago, I wrote a very desperate, slightly pathetic message to one of my doctors begging her to go back to my original dose of thyroid medication.

On it, my lab numbers are very low, slightly *below* the normal range. I keep telling her that I am a bottom hugger, just ask my cardiologist how I stay near my pacemaker low setting. But for 11 months, she has been tweaking my dose lower and lower by mixing two doses until I just went full time on the next lower dose.

I have been so miserable in so many ways, but I have been wildly upset about this weight gain and not yet knowing that Trileptal was the culprit, just like gabapentin, I wanted to change back to my beloved .112 dose. Because she believes in treating the whole person and not just the lab numbers, my doctor sent in a prescription for me instead of making me wait until I see her in January.

A week ago, I started waking up. By that I mean, I started getting back to my old miserable self, not the extra wretchedly miserable self that I have become with all the super-extra exhaustion, the fogginess on top of the brain fog, and the darkness I just didn't talk about.

I am no longer napping three times a day.
I can follow through on tasks.
I am brighter.

I was talking about it with my therapist on Tuesday and she teased me, "The sky's bluer. The grass greener." I won't print my reply. But darn her, the starry sky Friday night was so beautiful to me that I stood and stared at it a while before I went in to be reunited with my beloved Fluffernutter after my hospice visit!

Friday, I was even more awake. My GP noticed and was happy for me whilst I talked about it. Today, I smiled more than I have in eons.

The thing is, the way I track my thyroid is skin, hair, nails, and weight. Never has it been exhaustion, mental fog, and darkness. But man! MAN! I cannot get over just now much more energy I have compared to being out like a light much of the day, despite wanting to get things done. And my, oh my have I ever been productive in the past week. You'd be amazed! Not, mind you, have I tackled the master bath cold faucet yet.

It is easier to cope with the pain and the nausea and cognitive dysfunction and fainting and the blood sugar crashes and ... and ... and all the rest if you are not falling asleep all the time, if you are not so distracted and foggy, and if there isn't a pall of darkness draped over your very being. I have noticed that if I do not nap, then I sleep 12-13 hours. So, it is six in one and a half-dozen in another on whether it is better to nap or stay awake.

Writing is still my hardest task. [Don't laugh.] I'm talking writing about anything other than my life, although sometimes that is impossible, too. I've been trying to get four pieces done all week and have gotten nowhere. Time is running out on me.

Yet ... I am rejoicing. I have ME back. The old miserable me that went missing some time after we started mucking about with my thyroid medication. You'd better bet that I am going to hold on to that with both fists from now on.

Still, I am giving thanks and praise for having discovered a cure for the excessive exhaustion and the rest when all I wanted was the pain of dry skin to end and my nails to stop peeling and to finally get back to losing weight.

I am giving thanks and praise, also, because I have a doctor who trusts me when I say that another dose of medication was better for me even though the lab report differs.

I am giving thanks and praise, greatly, because I try to live fully the life I have between my flares of wretchedness, when the misery is manageable, endurable. I haven't been doing that for months and months and months. I haven't been doing that since I received the body blow of the news about my lungs ... right about the time the first big change in my thyroid medication was also kicking in for me.

I am giving thanks and praise, finally, because the program I want to start is no longer so wildly incredulous because I am significantly more able to be at the ready to help those whom I would like to help.

I am blessed. I am not always good at sharing when I am awed by a blessing, wondering if it is real or not, even after my GP says that it is in this case. I am more of a Doubter than Thomas ever was. But I do know that I am blessed.

Rejoice with me. At least those of you who suffer with me and pray for me ... now is your turn to rejoice with me!

I am an African man...

[I have been stuck on this for three days, so I am just going to post it.]


The Director of the NGO in Kenya, the work of which I have been watching, said that in one of his commentaries.  It resonated with me immediately.

I understood what he meant for himself, because I lived in Africa.  Life is different there.  Culture is different.  You cannot expect Africans to change their culture to accommodate theirs!  No!  You have to adjust your behavior and actions to respect the culture of the country in which you are, when living as an ex-patriot around the world.  So very many people do NOT understand this.

In his case, he was explaining the utter failure of the visit of a viewer of his work from America.  She came there and jumped right in with demanding documentation of his organization and its work.  She snuck around and gathered information herself.  And she questioned his integrity and accused him of improper behavior.  He was greatly offended and angry.  After telling her so, he shut down completely and asked her to leave.

As a man in Africa, he is the authority.  Women, if under his care, are to be director by him and protected by him.  You can see him do both on the videos, oft coming to the defense of the technicians removing the sandflies from the skin.  Woman certainly do not take authority over men, especially a stranger and a foreigner whom he did not know well.  Here, this woman came in the guise of a friend and set about proving he was a scam artist who abuses and manipulates victims for his own gain.  She even ultimately told the world this and set about destroying his NGO.

He explained that had she come and lived in Africa, working by his side and eating and sleeping with those who are suffering, he would have ultimately listened to any concerns or suggestions that he had.  But, given that he was an African man, she ran roughshod over his culture and disrespected him and his culture.  She was a bully and a liar.

She really did lie.

He and his organization was doing their work before he learned of video monetization and sought financial support from viewers around the world.  They also continued his work after she destroyed his reputation, sowed the seeds of doubt into listeners, left her lies on the Internet for all to find, and essentially cut off the bulk of the revenue that had allowed his organization to expand many times over its original footprint.  He also is a man of faith and great integrity.

Where are his houses and his cars?
Where are the luxurious items he would have bought?
Where are his hidden bank accounts?

I, myself, fell victim to her lies, because you cannot prove her the liar by Googling him or his organization.  When working on a shoestring budget in the poorest parts of Kenya, there is little money for a comprehensive administrative staff and Internet presence.

Besides, as an African man, the Director is not required to defend himself.

Ultimately, I listened to him.
I spent hours and hours viewing his organization's work.
And I considered who he is and his culture.

I have been greatly blessed by his opinions and observations about life and people.  I have reveled in what he has to say about the Bible and faith.  For me, I think he speaks of his faith in a way that I can understand, even though I cannot fathom how he does so, how he walks in it.  I spend time praying for the work of his organization, the staff, and the victims, both in these older videos and in the present. It is always good to be moved to and to spend time in prayer.

So, why am I blogging about this?  Because I want to cry out to the world, "I am _________"!

But what am I?  Not the question I ask myself.  But what do I want to cry out to the world?

• I am someone with chronic illness and chronic pain who is living the chronic life.  
• I am someone whose body is attacking itself.  
• I am someone who is constantly facing loss and, therefore, constantly grieving.
• I am a middle aged woman.  
• I am someone who lives with PTSD.  
• I am a Christian who doubts more than anyone in the history of mankind, but loves the Word of God and the Christian Book of Concord passionately and reads both every day.  
• I am a chief advocate of praying the Psalter.  

But how in the world do I fit that in "I am an African Man."

See me.  
Hear me.
Learn about me.  
Respect me by respecting the culture that is my life.

SIGH.

Another loss...

It wasn't the fainting or even the forgetting that told me something was terribly wrong with me.  It was the mistakes in my writing.  I never had mistakes before.  Okay, here or there since no one is perfect, but this was all the time.  My boss noticed, because she is a rather skilled writer.  I can give her that even though we oft differed greatly on how something should be written.  She noticed and was not happy at all.  Me?  I was staggered.

I had to edit myself all the time.  And it got to the point where I had to ask my dear friend Becky to edit my assignments for work.  I no longer trusted myself.

I no longer trusted myself as a writer.
That was devastating.

My mistakes were primarily subject/verb agreement and missing words.  I could not edit my own writing. It is rare that a writer can to a degree sufficient for publishing.  But I was still a rather good editor for others.  It is one of my greatest skills.

Now?

Now, I have begun to forget the rules of grammar and how to spell words.  For a long time, I have oft struggled with how to form letters.  It is why I now dislike writing by hand.  It is a truly exhausting endeavor between trying to form letters, trying to spell words, trying to concentrate, trying to comprehend, and trying to compose in a coherent fashion.  Now, add in grammar questions and mistakes, and I throw up my hands.  And yet I still believe that all thank you notes, at a bare minimum, need to be written by hand.  It is an act of respect and a demonstration of appreciation for the gift or help or honor bestowed upon you.

The grammar is a problem not only in writing by hand, but even with typing.  Especially with typing. There I am, writing along, and I get stuck on a rule of grammar.  Even comma rules!  Me!  The Comma Queen!!

For example, when you have a sentence with two independent clauses that are, rightly, separated with a comma that is placed after the end of the first independent clause and the second clause begins with an introductory phrase that is set off with a comma, do you use only a single comma after the conjunction, placing one after the introductory phrase or do you use two, placing one after the conjunction and again after the introductory phrase, which would result with a comma before and after the conjunction?

[Whew!  I believe I navigated the comma usage on that extremely long but grammatically correct sentence.  Older writing oft has sentences that are an entire paragraph long.  And they would have paragraphs that are as long, or longer even, a entire page.  Writing where you have to really work hard to follow the construction, but the reward was ever so worth the effort!]

I get caught up in grammar questions and find myself both frustrated and grieving whilst trying to write.  The sorrow overwhelms me and I stop.  I have lost ever so much, most of which few notice or hear me when I try to speak of my grief.

For me, the loss of my grammar prowess is a death knell to me as a writer.  I have been a writer since I was a young girl.  I wrote the manuscript of my first novel when I was seventeen.  It is how I make sense to the word.  It is how I speak.

I am unable to write without Google now.  Oft I cannot spell a word close enough for spellcheck to give me the correct spelling.  Google is much, much better at grasping what I am trying to write.  I have yet to find a way to use Google for when I know a word I want to use, but cannot grasp it in my mind.  But it has saved me in the spelling department, mostly, when it comes to writing with an Internet connection.

[The word "Internet" used to always be capitalized.  Is it now?  Or has that changed?  Or is it still the rule, but just one that everyone ignores, such as the proper pronouns for referencing people ("who" or "whom" but NOT "that."  ARGH!  I clench my teeth and grind my teeth every time I hear or see that error.  It is everywhere now.  SNIFF.  SNIFF.]

Googling grammar rules is more difficult for me.  I would say that, at best, I am 50/50 at finding the rule that I need.  Maybe that is because I am a fan of complex sentence structure juxtaposed with simple sentences.

An example of Google being superior to spellcheck is the word that I just used: "juxtaposed."  I wrote "juxtacomposed."  Spellcheck could not correct me.  Google asked me if I meant "juxtaposed."  I am ever so thankful for Google these days!

At least, I still have the rules for the use of quotation marks with end punctuation.  Those rules are so often violated that I believe they have been struck from modern grammar rule books.  SNIFF.  SNIFF.  They are so very easy peasy, too!  Commas and period always go inside an end quotation mark.  Colons and semi-colons always go outside an end quotation mark.  Question marks and exclamation marks go inside or outside an end quotation mark depending on their use.  Is the question mark for the quote?  Or is it for the entire sentence?  Answer that and you will know where to put your end quotation mark.  It is the same with exclamation marks.  See?  Easy peasy, right?

The rest of grammar rules?  They are slipping through my mental fingers.  And I grieve.  Deeply.
Will you weep with me?

An example...

A few weeks ago, I found a video on micro mesh travel nebulizer.  I wanted to know if nebulizing with sodium chloride was okay in it.  When I got it, the mesh nebulizers were new.  Now, there seems to be a lot on the market.

I was directed to look at my manual, which I cannot find.  Given how incredibly organized I am, I am surprised about that.  After all, I still have the manual for my first one that was nearing the size of a bread box and at least as heavy as a brick.  Maybe a bowling ball!  Traveling with it was ever so difficult.  The carrying case for my micro mess nebulizer is the size of a fancy hotdog bun!  It is so light that, if need be, I can hold it by gripping the breathing tube with my teeth.  For me, it is asthma BLISS.

I decided to look on YouTube to see what I can find and discovered a lovely introduction video to my unit.  In it, I learned that I was supposed to be regularly disinfecting and cleaning it.  Uhm ... I've never done that.  I vowed to do it post haste.

Yes, well, I just finished doing so.

Week after week I failed to get both the distilled water and distilled vinegar from the store.  After two weeks, I remembered the distilled water and it was, I think, two more weeks until I finally found where the distilled vinegar was and bought that.  Then, it was one final week ... or more ... of those two ugly, massive jugs sitting on the counter before I finally re-watched the video, mixed the two distilled products, and got the job done.

I forget.
I forget.
I forget.
I am exhausted.
I am exhausted.
I am exhausted.
I am exhausted.

Those two comprise the bulk of my life and, coupled with the cognitive dysfunction and issues with my frontal lobe functions, have been devastating to me.  I used to be ever so productive and the QUEEN of multi-tasking.

One thing.

I can only do one thing at a time.  I often rest during that one things.  And I might nap before and after.  That is, of course, if I haven't fainted or vomited or gotten dizzy or had low blood sugar or low blood pressure of coughing.

Coughing from an oft excruciatingly dry throat has taken over much of my days.  And nights.

During the day, when I am with others, I am shoving everything aside and trying to focus on that person and the conversation.  That is exhausting.  This is especially so because all I want to do is bewail whatever is my current misery and have the other person keep me company whist I sit in  sackcloth and ashes.

Only.

Only dragging myself to hospice has been the best thing that I have done since I moved here.  Probably since I returned home from serving as a missionary in Africa.  I spent my youth volunteering.  I do not know why I didn't pick it back up when I came home.  I mean, things were really difficult for me ... but why not a bit later?  Or any time in the past 30 years?

I am also working on starting a new in-reach program at church that I am hoping and dreaming and planing for it to be come even more than an outreach program.

Only, just like cleaning the nebulizer, though admittedly not quite as bad, I find myself plodding along in both building a solid foundation for my dream and getting it going at church.  Thus far, I have a simple website (though I'd like to add one more page), an instagram account, an email, a phone number, a draft of a business card, drafts of the bulletin insert, announcement blurb, and bookmarks to introduce it at church.  I also had a rather successful presentation to the board of elders, garnering my first volunteer.

I need to ...

AWK!

I was almost done ... FOUR HOURS AGO.  I got up for a drink to help with the coughing and forgot that I was writing a post.  SIGH.

It doesn't really matter what my outstanding tasks are for my new program.  What matters is what I started out saying.  The example I've given.  Gosh, it must have taken a month and a half to actually clean and disinfect my nebulizer!

Another example:  This week's laundry.  Day One first load washed.  Day Two, first load hung up and second load started.  Day Three, second load to the dryer.  Day Four, all the laundry in a basket, up the stairs, and onto the large sofa.  Day Five and Day Six, glancing at the laundry off and on.  Day Seven, hopefully, will be actually folding it.  Given how exhausted I am right now, Day Eight will be getting the laundry upstairs.  And, if all goes well, Day Nine will be putting the laundry away.  Since I usually, now, do a load every week, I am not sure when this week's laundry will be done.

Small steps.
Distractions.
Forgetting.
Exhaustion.
Frustration.

All blend together to make just about anything practically seem like a marathon.

Not I...

I've been listening to this guy who heads an organization that serves the poor in Kenya afflicted with a sand flea that lives in the skin and reproduces at an astounding rate. He knows the bible like no-one I have ever met. And he often opines as he films the work of his organization.

I tell you, treating infants with bugs taking over their feet, knees, hands, and "sitters" is heartbreaking. Just as it is to see those who've had the for years and have rotting skin beneath which more sand fleas are feasting away. You even see where nails, toes, and even fingers have been eaten! So, much of the time he is silent.

But when he speaks, I learn things. Things about Africa. Things about the bible. And things about one person living out faith as he and his organization pursues "love in action."

Why am I telling you this? Lately, I have been thinking deeply about how he constantly talks about being blessed and receiving grace.

You see, he believes that God has appointed him and each of his volunteers/staff to do the work (the love in action) they do in the lives of those they encounter. Because of that, he and his staff are blessed. And, because of that, he and his staff receive the grace they need to the work (the love in action) given to them by God. Likewise, those who are being treated are receiving the grace of God as well.

To me, this is an interesting way of speaking about the vocation of neighbor, about how all the good works we do are done by God through us, and about the Holy Spirit enables us to do that work.

To him, loving in action cannot be done without grace. For it is only by and with and through the grace of God that they can work the hours and days they do in the conditions they encounter and on people who are often silent or writhing or so foul-smelling that not even vapor rub in the nose helps much.

In primitive conditions, they use scalpels to cut out the sand fleas and debride the thick, crusted, and/or rotten skin to promote healing. They clean people and homes, often spreading cow dung laced with a flea deterrent on the floors of the latter. They burn infested bedding and clothing and try to get replacements. They teach hygiene and social skills. They repeatedly serve the people unable to stop re-infestations. And they do all this work, now, after an attack that nearly destroyed the organization and permanently ruined its reputation. He is either the devil or a living saint ... only he always talks about how people, as sinners, are full of crap and so is he.

I have been thinking about how others tell me how great I am for volunteering in hospice or how special I am, for only special people can do that work. In this guy's view, it is because of God anointing me as the one to do the work and then being given His grace so that I could do it. That is because God wants to bestow His grace upon those whom I visit in hospice. To me, THIS MAKES SO MUCH SENSE!

I have had two people call me a living angel. I am no angel! Theologically speaking or figuratively. I am just me. And, I truly believe, I am not special. It does not take a special person to be a hospice volunteer. It only takes someone willing. Because it is not the person doing the work of tending to the dying. It is God. His grace enables the volunteer so that His grace can be bestowed upon the one who is dying.

I haven't mentioned this to my dear friend Mary, who teaches me so very much about Jesus, the sweet, sweet Gospel, and theology. Especially since vocation is her speciality. I figure she might eventually read this and then she might correct me. I do want to know what is theologically correct. But, for now, I am reveling in the confirmation, if you will, that it is not I who compels me to walk into that hospital room or that nursing home room, even when I am feeling most wretched, but God. I am no more special than any of His Created. And that is a good thing.

Hating pain...

I have ten millions drafts, all only just started, because it is near impossible for me to concentrate.  You'd be amazed, I think, at how difficult it for me to write on Facebook.  But I will say, again, if you are at all interested in what is happening to me that you should go there.  You do not have to friend me, Myrtle Bernice Adams, because most of my posts are public now.  You can just follow me.

Anyway, I have half a mind to take the plunge and just start "publishing" all those half-started posts.  Or publish whatever I get written going forward, in a way of showing how my mind is struggling.  And in a way of not silencing myself.  I miss my voice.

I deeply miss writing.

I have been writing since I was a young child.  It grieves, deeply and greatly and truly ineffably, that I am losing my ability to write.  I, the Grammar Queen, am making grammar mistakes and am starting to forget the beloved rules of grammar.  I, the one who still LOVES diagramming sentences, now struggles to identify how words are acting in a sentence.  Diagramming would be ever so difficult, now, if not plain impossible.

But all of that is neither here nor there for this post.  Because I am also going to start posting one thought, so as to have a better chance of actually getting back to regularly posting here on my online rememberer that I have had going for years and years and years and years.

I read on Facebook, yesterday, a meme post asking what makes you want to get out of bed in the morning.  Well, nothing. I do not want to get out of bed.  Why I do is another post.  Mostly, I just focus on that I hate my life and I do not want to live it.  Doing so is wretchedly miserable.

Mary had a thought that she shared with me, because she knows how important reframing is to me.  She reframed for me:  "It is not life that you hate but pain."

On a very significant level, Mary is right.  I do hate the pain.  I hate enduring it.  I hate dreading it.  I hate surviving the incredible flares.  I hate the post periods after those flares.  Wouldn't any sane person?

I do not hate life, itself.  I do hate my life, but it is very much because it is a life of pain.

I hurt all the time.
All. The. Time.

I hurt when I am smiling.  I hurt when I am laughing.  I hurt when I am at church.  I hurt when I am volunteering with hospice.  I hurt when I am snuggling with Amos.  I hurt when I am cooking.  I hurt when I am seeking peace by puttering away in the soil.  I hurt.  All the time.

I hurt especially now because I got cortisone shots in both of my wrists today.  Yes, I have carpal tunnel syndrome.  Yet another way that Sjögren's is attacking my body, inflaming and swelling the nerve running through my carpal tunnel.  Shots first.  Then surgery if the shots do not work.  SIGH.

But I was enduring the pain I had from the shots rather well until I started typing.  The edge of the keyboard is pressing against the spot where I had the shots.  My pain level has jumped from a 6 to a 9.

So, I am off to rage against the pain.
Bewail my existence.
And clutch Amos.

Nothing...

I spent the past five hours trying to write a response to an article that someone posted.  In the end, I deleted everything.

Mostly, I think that my thoughts do not matter.  I mean, not as Dr. __________ anymore.  Not as communications staff anymore.  Not as knowledge management staff anymore.  Not really as anything.

But there is the problem that, these days, whenever I try to say something important to me, to try and present my view, I tank at it.  I really do.  I offend.  The very opposite of what I mean comes across as what I am saying.  I sound stupid.  I sound callous.  I mean, just about every negative response there can be comes back at me.

The one that always cuts the deepest is: you always ....

This is also, for that matter, why I believe I will never escape my past, be it what happened to me or mistakes I made.  Gosh, even my childish likes and youthful preferences are fodder for what's wrong with Myrtle some three or four decades later.

I thought that once I hit 50, things would change.  I would no longer be the child, no longer be viewed as someone who can be dismissed so easily.  But even I say, even I realize, that there is a little girl inside of me who has never grown up.  Truth be told: She's never felt safe.

Anyway, I read through what I wrote dozens of times and ended up just saying nothing at all.

These days, there is ever so much that I want to say.
And I do talk a lot, at times.
But I say nothing at all.

Ah, life...

I go to write and then I find that the evening has gone into the night and not a word has been posted here.  Many, many days pass by with little more than battling my body, especially nausea and exhaustion.  But I thought of something:  my Facebook posts.

On Facebook, I am Myrtle Bernice Adams. You can click on that name and it will take you to my Facebook profile.  I post nearly everything public these days, because I did not always want to accept friend requests from folk I do not necessarily know.  But if they want to know what I post, read away.   I made it so that folk can follow me if they wish.

I have been posting more and more of life things.  Things I would post here if I could write several times a day.  Some of them have been long and introspective.  I post about being ill.  I post about Amos.  I post about cooking.  It is a feed that is neither a one of a life that is hunky-dory nor that of a suffering saint.  I fail to praise God in my suffering ... fail to trust Him to care and provide.  In short, the darkness wins when I am lost in pain or nausea or presyncope or a blood sugar or blood pressure crash.

But I sure do savor the Word of God.
Especially the psalter.

I started volunteering with hospice.  It took me months and months and months to do the online training and the final interview.  Honestly, volunteering with hospice is an honor and a privilege.  It is a marvel, at times, that I get to sit with the dying.  And, for the life of me, I cannot figure out why I did not return to volunteering with hospice after returning from Africa.  How could I have forgotten about the blessings of volunteering with hospice, especially all that you learn?  Boggles the mind.

One of the myriad ways I've been battling my body is the torture of my mind when I manage to sleep.  If I do sleep—nausea and pain make sleeping rather difficult—I have terrible dreams.  Sometimes they are dreams on a theme, but most of the time they are chapter dreams, where I wake up for fresh ice packs, fall back to sleep, and find myself right back where the dream left off. Even when I've begged God for some respite.

They are often hard for me, my dreams.  I have a different life in some of them.  Many of them.  A few lives.  Or rather I have one life in which I live three different places. I have houses that are just as real to me as my beloved home here in Fort Wayne.  Leslie is my realtor there, as well.  But she is different ... or I am.

I keep losing my vehicle via not being able to remember where I parked.  I never have my cell phone charged.  And, when I try to use it, I cannot dial it. I am oft without phone and money.  Sometimes, I am going back to college for a second Ph.D.  Only I know that I cannot go because of my cheese-hrain of mine.  I fail class after class, being unable to take in new information and to concentrate.  It is almost comical, if you think about it.  But it is not comical for me.

When I wake, I am often confused as to what is real: the dream or the life I am living now.  It is difficult to explain.  Even as I am telling myself that it is just a dream, I think about what I just did or what I need to do for the dream world.  I tell myself again and again that it was just a dream.  And then  Leslie will ask me what kind of tea will I want, and I start noting in my mind things for her visit, such as the books I would like for us to read in or reading group.  Only we have no reading group. I know the dreams are not real, but I continue trying to live that life in the real world for a while, before I can fully grasp what this is on in them for a while.  

I have dreams where I am trying to escape.  I am climbing and crawling and walking and running.  The exhaustion is so great that I have to push and push and push in the hopes that I can get home.  The endless physical struggle to get home is exhausting, and I wake much more tired that when I was asleep.  Being in such a horrible place and mindset, I despair over the mind torture and have started to dread going to sleep.

Right now, however, I am falling asleep.  I always try to date on the "day" I am writing, regardless of the hour. Hence so many posts marked at 11:59.  It is, however, just after 4:00 AM.  The nausea that has been ever present for many days now has eased enough for me to sleep.  So, I am going to drag myself upstairs.  But ...

... but I have posted, have given my Facebook profile for those who want to follow what is going on in my life on the days I fail to post, and have tried to write down a thought I have, a trial I am facing, even as I, in my dreams, found myself repeatedly being left alone even though I have folk who could come to be with me.

I've spent the past fifteen minutes now trying to fix a sentence on there.  No forgetting. IBN. I wouldn't want to ... crap.  I'm going to sleep without re-reading this.  I hope you understand, at least, that dreams are plaguing

Sustenance...

My brother has become a minimalist.  It is something of an irritant for some members of our family.  It is also not quite understood.  I make no claim to truly understand, as we have never been very close, but I do understand, intimately, his need for and response to visual rest.  Minimalism creates the ultimate visual rest in the home.

I sometimes joke that I am waiting to hear that my brother has sold himself.  No!  Not that way!!  By this I mean, he has sold ever so much of his possessions, first downsizing and then minimalizing his home.  He desires empty walls, empty surfaces, and sparely furnished rooms. He could, quite happily, live in a spare room for the rest of his life ... if that room were isolated from the rest of the world.  I do not believe he would enjoy a tiny home, but he would be the perfect candidate for thriving in the space.  Maybe one with vaulted ceilings, space around the property, and a short walk from the ocean.

In his journey, he encountered Marie Kondo and her philosophy of Tidying Up, a combination of downsizing and organizing to free one from home management so one can enjoy a richer, more full life.  I confess that I tuned him out the first few times that he talked about her.  But then I found her series "Tidying Up" on Netflix and watched it.

I admit that I started and stopped the first two episodes several times, because I found some of Kondo's processes a tad ... out there.  However, as I eventually plowed through the series, the repetition of the show's format helped me better appreciate the scope of what she has to offer.

Take the giving of thanks.  Kondo teaches folk to give thanks to the articles of clothing, household items, and other possessions that are being donated or discarded.  Thanking a shirt?  That's just plain silly, I thought.  But then I learned a significant reason behind teaching homeowners to do such:  it helps them deal with the guilt that can arise in donating/discarding things.  Ah!  How smart! I thought, having watched many episodes of A&E's "Hoarders" in years past.

In thinking more deeply upon this concept, I realized that the giving of thanks is rather important in downsizing/discarding!  I mean, you don't have to give thanks to the inanimate when the Author of the gift of those good things you have been using is animate:  God!  I had already been working on giving thanks, audibly, when I realized I had received something good, be it tangible or intangible.  This was just another level of being thankful.

Thinking such thoughts and watching episode after episode, I started thinking, rather deeply, about the Lord's Prayer and what "daily bread" means.  I came to understand it to be mean much more than bread or rather food!  [Go ahead and laugh at me, if you will over such simplicity of thought.]  I began to see daily bread as all that we are given to live this life.  My pausing to give verbal thanks grew in frequency as pondered the concept as I went throughout my days.

Well, recently, I ended up talking about it with a doctor of mine.  And I came smack up against my lack of word knowledge for all my word nerdhood.  You see, as I was talking, my doctor said, "daily bread means sustenance."  No!  I wanted to shout.  That's not what I mean at all.  It is ever so much more.  Instead of shouting, I tried to explain, but my words faltered and confusion crossed her face even as she was trying to encourage me to keep trying.  I covered my disappointment by moving on to a different facet of learning from Kondo's show:  that of joy.

Once home, I tried to write about daily bread in one of my many abandoned blog posts and got nowhere.  It was not until a week or so later that I thought to look up the word "sustenance."  Lo and behold, my doctor was right!  Sustenance means the maintaining of someone or something in life or existence.  Yep!  That is exactly what I was trying to say.  After chasing down the definition of words for several days, trying to figure out where I went wrong, I finally hit upon the word I thought that she was saying:  subsistence.

Subsistence is a minimum level of existence.  That's the difference ... the development ... in my understanding of the Lord's Prayer watching Kondo's show brought about.  I had always thought that, when praying, we were asking for a minimum level of existence to just remain alive in this world.  However, I now believe that the daily bread God provides for us is sustenance level, not substance level.

It isn't just a roof over my head, although sometimes that is the case.  It is this roof at this time in my life.  I needed a higher roof ... and a more spacious roof.  I needed such to be able to move past being triggered 24/7 with my PTSD.  I could talk more about why I believe that my Good Shepherd provided this house for me in how it is helping me survive mentally, as well as physically, but I am shy about sharing such thoughts.  I wonder and worry that they might be veering into the scope of being sacrilegious (or whatever word is the right word there because I am not certain sacrilegious is the right one) and I do not want that.

But I do know that God does not desire for us a minimum level of existence.  I know this because He did not create a minimum level of existence when He created the world.  I always, always marvel that some of the most beautiful colors in all of creation are in the fish inhabiting the ocean depths man does not see.  I marvel at the varied hues of green in this world, the varied hues of all colors in creation.  I marvel at the beauty of flowers, but also the beauty of leaves.  I am, after all, a sucker for any and all variegated leaves in creation. But it is not just the colors of leaves that causes my wonder.  The shape and texture and structure of them catches my eye and my praise.

ARGH!  I just know that I am fumbling and bumbling my way through what I am trying to say.  Simply put, there is such astounding beauty and almost ineffable variety in creation that there is no way that anyone could describe this world as minimalistic.  It is a world overflowing with ineffable riches.

My daily bread includes medical care.  God has provided me, here in Fort Wayne, the best medical care I have experienced in my entire life at a time when medical care is a great need.  I have doctors who genuinely care about me.  I have doctors who are knowledgable about my conditions that are generally unfamiliar to those in the medical field.  And I have doctors who both understand and are willing to work with my limited means and ability to afford such care.

If nothing else communications the expansion of my understanding, I know know that the daily bread God has provided is a therapist who sees and hears me, who is knowledgable about both chronic illness and sexual abuse, and who does not charge me the $40 co-pay I owe for each visit.  Having one of those would be a blessing.  Having all three is a veritable miracle.  It is certainly far beyond the minimal need and certainly adds to what I need to continue my existence in this world.

I feel like a Holy Roller (something to be avoided at all costs growing up in the Bible Belt) saying, "Thank you, Jesus" throughout my day.  But I do.  I think speaking it and hearing myself speak it is important for me ... for my benefit, rather than the benefit of anyone else who might ever hear me.

I feel like a dolt for conflating sustenance and subsistence and trying to tell my doctor that she was wrong.  More and more, I find myself opening up the dictionary (opening up Google) just to see what the actual definition is of a word that is one that I know.  I do this because I have developed a standard of knowing that requires my ability to define the word for someone else, not just use it in a sentence or understand a sentence in which it is used.  And I do this because my brain is failing.

I am not sure if I have crafted a coherent post about daily bread.  I would not, were I pressed, admit to any such thing.  But perhaps my communication stuttering here is still sufficient to get the meaning across.

I am thankful for my brother and for Marie Kondo, because I am thankful for the impetus to delve into the meaning  (or really the concept) of daily bread.


PS  I will crow that conflate is a new word for me and the first time that I have both understood it fully and been able to use it.  I follow several rather intelligent folk on Twitter and it is a word that has oft been used by many of them.  Although, when I learned the meaning of ubiquitous, back in the dark ages, the teacher using it explained that when we learn a new word it is oft seemingly ubiquitous because we begin to notice the new word when we are reading.  However, it often is not actually ubiquitous because we, as readers, skip over words that we do not know when we can understand the meaning of the sentence from the rest of the words.  In all likelihood, the word has been prevalent in prior reading, too.  I had been struggling to fully grasp "conflate," but having conflated those two words, I finally grasp the meaning of "conflate," as well as sustenance!

Two minutes...

I keep trying to write.  I keep finding myself unable to frame thoughts, unable to finish.  This time, I am finishing even it it means just hitting publish with a broken-off sentence.

SIGH.

It has been two years.  Two years.  It has been two years since I started therapy.  Or, rather, it has been two years since I started therapy again.

I have had pretty rotten experiences at trying to get help.

I went to a rape crisis center, after being assaulted the last time, and was told by the counselor, who listened to a brief history, that she did not believe I could ever be helped.  She refused to even let me have the 10 (or was it 12?) sessions the county offered.  Instead, she said she would help me look for someone on my insurance plan.  Well, that was something that I could do by myself!

There was only one counselor on my plan taking new clients.  He was not kind.  For one, he told me, every single time I paid, which was every single time I saw him, that I needed to thank him, because he was being reimbursed for less than his usual fee.  He would wait for me to thank him before writing the receipt I needed.

He also told me that I was not capable of loving and therefore not capable of loving God, so I should stop wasting my time trying to be a Christian.  He was, however, very much pro-hinduism (or what is buddhism??)  and spent much of our sessions talking about that.  I guess you don't have to love to practice hinduism?

I kept seeing him until I fled Alexandria.

After a year here, I believe, I tried to find someone to help me.  I saw a woman for almost a year, who kept trying to ... well ... there were good things that she did, but she kept trying to diagnose me with "disorders typically co-morbid (concurrent) with being an abuse survivor."  You know, being a surviver of abuse is not actually a disorder or a mental illness.  A lot of folk in both the mental health and the medical fields forget that.

After a year, when her non-profit agency treatment limit was reached, suddenly I was too disturbed for her to help.  She asked me to meet in a different room.  I was told I was this, that, and the other, even though I did not meet the diagnosis criteria, and that she was out of her depth.  I needed to see someone else somewhere else.

It was a long time before I tried again.
The thought of starting again was overwhelming.

Then, I went to a women's organization.  Surely, a woman's organization would know about being a survivor of abuse, right?  Well, the first counselor with whom I worked was promoted.  I had to start all over again.  When I got up the nerve to do so, that counselor took another job.  I didn't think that I could try a third time.  When I did, the kindest thing that I can say about that counselor would be nothing.  But I will say that counselors should not yell at you, give you gifts, or go out with you.  Counseling is not about being friends.  I am still wounded from some of the things that she did and said, but I can recognize that she was not professional.

I thought I was done.

But then something happened that hurt me deeply and made me feel as if I was being trapped, made me feel as if I might never escape.  Among other things, I felt as if I might never escape the labels that are all too frequently put up survivors of abuse, even by folk in the medical field.

I tried one last time.

One thing that I have learned is that this is the first genuine therapy that I have ever had.  I have learned that, despite my history, I am not hopeless as far as the potential of therapy.  Nobody is.  I gave learned that being able to love is not actually a requirement for being a Christian and that whatever faith I choose is not contingent upon not being an abuse survivor.  I have learned that payment, or lack thereof, is not a guarantee of the quality of therapy.  I have learned (by experiencing) what professional behavior by a counselor looks like.  And I have learned that I am capable of change despite my own fears and deep-seated beliefs.

However, I have also learned that I am, in many ways, only at the beginning of therapy.
That is frightening.
And frustrating.

After two years, I am finally at the point where I can begin real work.  It is not that I haven't been working during the past two years, but I have, primarily, been learning that her office is a safe space for me and that it is okay for me to be ill.  It is okay for me to desire the things I desire as someone who is chronically ill.  However, most folk are either uncomfortable with illness or unaware of what to say/do or both.  Often, it is both.  Plus, it is just plain easier if you have cancer.  People at least understand cancer as a general concept of being ill.

I have learned to be brave in saying what is on my mind, even if it takes a few sessions to raise the topic or speaking takes 10 minutes to get out a single sentence.  That is a terribly difficult lesson, since a fear of trust is one of the 12 Life-Impacting Symptoms of Complex PTSD in the article I have tried to share with friends and family and others in my life.  I absolutely stink at trusting.

A doctor I saw recently said that she had shared the article with 45 patients, as well as with other doctors and with professionals in the mental health field.  My therapist has done the same, though she has not given me numbers.  It is a life-changing article.  It is a freeing article.  It can be a conversation starter, a door-opener, and it can be an effective tool for education, coping, and/or healing.  It is certainly eye-opening.

One of the ways that it has helped me is that I am more aware of some of my symptoms of PTSD and, as a result of that, I have started to identify some of my triggers.  One example is that I am much more aware of when I am muscle-armoring.  Whilst I am not always good at identifying why I might be doing so, I am aware, at that time, of how the muscle-armoring is affecting the other symptoms plaguing my body.  Muscle-armoring pretty much makes everything worse.  Trying to relax my muscles, to focus on doing so, helps both the PTSD and how I feel physically, to some degree.

One of the greatest blessings that God has provided me is bringing me to a therapist who is also a nurse (practiced years ago).  She understands the profound and overwhelming impact chronic illness is having on me, especially since being diagnosed with Sjögren's Syndrome.  She gets it.  And she never, ever allows me to belittle or dismiss that suffering or that burden the way I am wont to do since that is a stance I have oft experienced by others.

You could say that I have spent the last two years getting to a place where I can begin to look at the impact my ill health is having on me without flinching.  But I flinch a lot.  I am, however, far more able to communicate my ill health without being crippled by shame and waves of certainty of my unworthiness.  All you need to do is friend or follow me on Facebook and you will see that!  Yes, my FB wall is not peppered with all that is sugar and sweet.

Although I do like sweets.
A lot.
Maybe too much.
Can there be too much liking of sweets?
Maybe not if you are ill.
Especially with Sjögren's.
Right?

But, I suppose, I have digressed and the hours are passing as I am trying to write this.

Why did I start this post? Tonight, I watched something that was sad.  Amos looked up at me, as it was ending, and then left his comfortable position atop three pillows (being King-of-the-Mountain is one of his great loves) and I told him, "Yes, momma is sad."

And then.

And then I said, "I'm never going to be a mother."  Hearing the words in my ears, those words spoken by me into my ears, gutted me.  I burst into tears as I felt them.  I am never going to be a mother.  I sobbed them as tears flooded my normally desert-dry eyes and began streaming down my face.  For all of a mere two minutes, I felt those words.  Then, my mind and my body fled from the feeling.  And I let them.  In the next minute, I had disassociated and my mind and body stilled.  At four minutes, my face was still rather wet, but my eyes were dry and I was calm.

But, you see, for two minutes, a veritable eternity to me, I felt.  When I tell my therapist, she's going to struggle to hide her joy and happiness for achieving such a massive milestone.  I only had to tell her once that getting all giddy over something I did is very hard for me causes me to shut down.  This past week, I told her about making a new friend, and she squashed down her giddiness in a rather impressive manner before I could finish blinking.  Though, my therapist could not keep a twinkle from her eye when she asked me questions about said friend.

Even I was a tad ... happy?? proud??  relieved?? ... that I allowed myself to feel for two minutes.  I know my therapist will be giddy beyond measure.  However, her very first question will be:  "What were you feeling?"  Ah, crap!  I stink at identifying feelings.  I tend to give states of being instead of feelings.  And, in this case, that is what I have:  grief.  I was grieving.

I still fantasize about being a mother.  I know that my body will never make me a mother.  I mean, I still have no signs of menopause, so, perhaps, with lots of medical help, I could achieve pregnancy.  But I doubt that my body would carry to term.  And I highly doubt any doctor would agree to put me through the mental trauma it would take to inseminate me or risk what a pregnancy would do to my health.

The truth is that I still fantasize about being a mother through foster care.  I know that I cannot be a mother of a baby or any child who would need to be picked up or carried.  I am too weak for that now.  I mean, I am really only able to do so with Amos because of 1) his weight and 2) his preference for being up on my shoulders.  I am fairly certain it would be impossible to put a baby up on my shoulders or any young child weighing 22 pounds or less.

And then there is the whole fainting and nausea and pain situation.  I need to be a foster mother whose charges are able to clothe, feed, and even get themselves to school in a pinch, rather than need 24/7 care.  I need charges who need a place of safety and a freezer full of mason jar meals.  I need charges who are still in need of parenting, but who are testing the waters of independence.  Basically, I need teenagers to mother.

But no one in his/her right mind is going to put a foster child, even a teenager, in the house of a chronically ill person.  All those fantasies aside, I am never going to be a mother.  For many women, that is a devastating realization, married or single.  For me, it is the death of a hope I have harbored most of my life:  the hope of the kind of family I long for, the hope of a chance to do things right.

I try to tell me sister more frequently now that her mothering is a marvel.  She loves her children fiercely and is affectionate with them.  She is proud of them and tells them so.  She goes to school and sporting events.  Although a single, working mother, she tries to be involved in schooling and sporting even if in small ways.  She takes time off of work just to be with them, not because she has to do so.  She thinks of her children often and lets them know that.

To me, it speaks VOLUMES to me that both of my sister's teenage sons will talk to her about their struggles, even if getting there with the one with autism can take longer.  And it is unfathomable to me that she continues to reach out to and try to help her adult daughter, a daughter who has yet to take responsibility of her own life and often wounds my sister in what many would say are unforgivable ways. To me, my sister is selfless in her mothering, even if some of her family say that she holds her boys too closely and I wish for her boys to have a few more experiences than they do.

I know that my family has strong feelings about my sister as a mother, but she has not been supported as such, respected as such.  How difficult that must have been for her all of these years! Nor did she have a strong parenting experience herself.  In short, my sister mothers in a way she was not mothered.  She got the chance to have the kind of family she wanted.

I never will.
I will never be a mother.

How does that make me feel?  I have not a clue.  I know that it was a powerful emotion(s).  I know that that my emotion(s) came from a place of grief, at least.  And I know that my emotion(s) was too much for me.

But I remained present in that grief.
For two minutes.

Melding...

I've been trying to write this one post for three months now.  I decided to stop.  I don't know when I can finish it.  Perhaps I won't and will just publish it as is.  For now, I thought I would get back to writing before I stop forever.

Life has changed for me.

I think I have become sick.  By that I mean, I no longer believe that I can pretend to be well, the way that I do when folk come around.  Don't get me wrong.  I'm certain to still try.  But I am struggling to get through the days and nights.  They have melded together in a sea of extreme fatigue, pain, pre-syncope, and nausea.

I should that it is more like standing on the shore and being pummeled by waves.  In between them, is a gentle quiet that I enjoy with Amos.  I am still trying to live in the in-between.  But the fatigue is making that rather difficult.

It is rare for me to have productivity in my days.  Primarily, I wake, tend to Amos, and languish on the sofa.  I have been letting dishes pile up in the sink until it is so full that I must do them.  I dislike the lack of visual rest, but the very thought of doing anything exhausts me.

Trying to concentrate enough to do anything is also exhausting.  Tending to my bills and re-jiggering my meager funds takes up the majority of whatever brain power I can muster up.

I did decide to sell things around the house, starting with listing my antique typewriter.  It was hard, letting go of the things I have bought over the years and things given to me by others.  However, I had much success selling on Facebook Marketplace.

Last year, I was approximately $600 behind in medical at the close of the year.  I also have the $349 lung wash hospital bill waiting.  And my dental visit in February resulting in the 5th cavity/filling in just under a year.  That bill was $330.  I was trying to get to $1,200 so that I could start the year (even though it was already February when I started selling.

The more I sold the more brutal I got with myself as far as choosing more items to sell.  I sold antique books, antique cameras, and antique doodads, such as a postage scale, aviator glasses, and toiletry tins.  I sold and sold and sold, which was exhausting between taking the photos and measurements, creating the listings, chatting with buyers, and getting up for their pickups.  I sold and sold and sold until I reached $1,848 across 104 sales.  I was so very excited to actually get ahead.

Alas, though.  My eight-year-old washing machine broke.  I gave it the old college try as far as repairing it, but whilst I learned how to open a machine and futz with the pump, the washing machine still needed repair or replacement.  I chose the latter, believing repair would be throwing good money after bad.

I was so proud that, over the last six months, I had started an emergency fund savings account and was nearing $1,000.  Dave Ramsey would be around.  With all my budgeting savings accounts, I thought surely and emergency fund would be superfluous.  Alas, I was wrong.  This ungrateful wretch cannot be thankful that she had the funds to purchase a washing machine, because she is still despairing that she cannot win for losing.

For the past three years, I have slivered my budgetary pie and looked for savings every which way to Sunday.  However, each time I gain myself some breathing room each month,  I find myself facing another medical bill or the like.  It seems like every week I'm trying to figure out how to pay for another medication.  SIGH.

So, my days meld into one another until they are a sea of nothingness.  I wake, putter, and then fall asleep again after just three hours.  I wake, putter, and then fall asleep a second time.  I have sometimes even had a third nap.  I wonder at what my life has become, at what is happening to my body because of the ravages of Sjögren's Syndrome.

I am ill each and every day ... in body and in spirit.

Frozen...

I'm frozen.

I've three blog entries started, but paused.  Frozen in thought.  But it is not just that.  I am frozen in body ... nearly.  I am so bloody exhausted that just doing one single thing a day leaves me needing nap after nap after nap.  I cooked ham one night and roast the second night and it took me five days to finish cleaning the kitchen.  Not having visual rest in there drove me crazy and exhausted me further, but there is no one else to clean.  Just me.

I'm frozen.

I'm frozen in my thoughts, unable to move further from the ones that have piled up around me, holding me in places I do not wish to be.  I am frozen because I am completely and utterly overwhelmed.  Some of it is good, but most of it is bad.  I cannot move beyond the moment when my pulomonogist said that we had to shift our treatment thinking from getting better to not getting worse.  From the moment when she said we had to weigh the dangers of the new treatment with the dangers of my symptoms, or rather the progression of them, of the disease.

I cannot move beyond where we've landed in therapy with regard to sexual abuse.  Or where we've landed with regard to PTSD.  Or looking at the enormity of what is happening to my body.

I'm frozen.

I'm frozen in dealing with all the medical issues before me.  The tests and the new diagnoses, both of which are extremely painful.  The many doctor visits and trying to swallow bad news after difficult news after troubling news.  The medications and what some of them mean in taking them.  The costs that are simply more than I have or more than I can squeeze out of my bone dry rag of an income.  Not a single drop can be had, and yet I have new expense after new expense.

I'm frozen.

I'm frozen in fear.  Fear of what is next.  Fear of my own body.  Fear of not being able to remain independent.  Fear of my mind.  Fear of my new mediation.  Fear of my salvation.

I'm frozen.