Friday, December 13, 2019

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.


Tuesday, November 12, 2019

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!

Wednesday, October 30, 2019

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.


Sunday, October 27, 2019

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, 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?

Saturday, October 26, 2019

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 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 ...


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.

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

Wednesday, October 09, 2019

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.

Tuesday, October 08, 2019

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 Sj√∂gren'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.