tag:blogger.com,1999:blog-31138972024-03-13T23:19:59.894-04:00Merely MusingOne voice in the midst of manyUnknownnoreply@blogger.comBlogger3146125tag:blogger.com,1999:blog-3113897.post-78235791119177913852020-11-09T01:51:00.000-05:002020-11-09T01:51:05.701-05:00Nine in twelve...<p><br /></p><p>I had nine medical appointments in twelve days. </p><p>I've been primarily sleeping since I arrived back home from Friday's testing. Today is Monday, although it has barely begun. For me, it is still Sunday. As Monday, it is my last day of being radioactive from the nuclear scans I had before and after the stress test. It is really hard not to worry about the radioactive liquid being injected into your vein when it is brought into the room inside a lead container by a tech wearing a radioactive alarm badge <i>and</i> ring, because even spills are dangerous! But, you know, I'm not to worry about it at all!</p><p>I tanked the stress test. I was so very surprised at that. Just a few minutes into it, my heart rate began to plummet, as did my blood pressure, until the latter was unreadable. A chair was put on the treadmill and lots of worried folk surrounded me. I wanted to try again, but I was overruled. It was the chemical version for me.</p><p>Two weeks ago, during my last appointment with my GP, we both had been thinking the same thing: despite my ongoing fatigue, what if I started back on the treadmill? She thought I should and suggested I start at 5 minutes. I laughed at her number. I did check with my cardiologist, who was in full agreement that I should start trying to regularly exercise and that is what I could do before my long illness, before my life consisted of falling asleep all the time. But my GP wanted me to get through Friday's testing first.</p><div style="text-align: left;">Everything was normal.<br />No answer as to why I am having chest pain.<br />No answer as to why my pacemaker is giving me tachycardia at rest and whilst I am sleeping.</div><p>Despite doing little besides sleeping, taking Amos out, feeding him, and eating myself on Saturday, I did try the treadmill. My body started tanking at 4 minutes! My treadmill was <i>not</i> on an incline and I was walking <i>much</i> slower. I pushed through to 5 minutes anyway, but it was a close call to remaining vertical.</p><p>Today (Sunday) was much the same as to activities, with my endurance on the treadmill lasting only 3:31 before my body tanked. I still pushed until that 5 minute mark. I am stubborn that way.</p><p>I might also be stupid.</p><p>I am deeply frustrate at what my long illness has done to me. In many ways, I feel like my doctors are not hearing me about how weak I still am. It is not like I have been super lazy. I mean, I live alone. So, I have to keep my own household, which includes a dog. Yes, cleaning is mostly on the back burner, but I do have to keep up with laundry and food and trash/recycling and ten million medical appointments. My home is effectively three floors, so I do have to walk up and down stairs. And the Rat Bastard requires me to go outside with him and be with him as he tends to his business, actually walking around with him if it is his major business. I even have to go accompany him each time he drinks water because Mr. Prima Donna will only drink water he sees freshly poured (otherwise he goes to the "fresh water" in the toilet). So, it is not like I am sedentary in between all my napping.</p><p>A while ago, I launched the Take Back My Life Campaign, so I am doing small tasks around the house every day to catch up on months and months and months of illness and then surgery. Even today, with the help of Leslie's pop-by visit, I emptied my dishwasher, so I could empty the dirty dishes in the sink. I also folded a load of laundry in between naps that I washed in between naps yesterday. And eventually the exhaustion of spending seven hours going to the hospital for all that testing and then the lab for blood work after a week with four other appointments will be wiped away with all my extra napping and I will be back to my normal crushing fatigue and can accomplish a larger task, such as organize my bathroom cabinet, which has been wanting for months now.</p><p>But I've got four appointments again this week. So, I imagine I will be sleeping much of the day for the rest of this week and weekend and maybe into next week.</p><p><br /></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-89928657642230718492020-10-30T17:48:00.000-04:002020-10-30T17:48:06.027-04:00Four and five...<p> </p><p>Four appointments this week, three of them yesterday! I was so incredibly exhausted. I have five appointments next week. One of them is a treadmill test that involves two isotope scans of my heart. If that comes out clear, then we shall set aside the chest pains for now. SIGH.</p><p>The fast heartbeats are either arrhythmias my pacemaker is not picking up, tachycardia, pacing, or a figment of my Fitbit, since my pacemaker it not show the same high numbers! THAT surprised me. My GP suggested that I also use my pulseoximeter to double check my heart rate. She has such a brilliant mind! Of course, I forgot to do that at 5:31, 6:09, and 7:11 this morning. SIGH.</p><p>I haven't accomplished much the past three days. I am bothered with how fatigued I am. Instead, I mostly languish on the sofa and sternly tell myself to DO SOMETHING. Then I do the <i>tiniest</i> of somethings on the computer. Well, Wednesday, I did reconcile my checking account, which I had not done for a month. Usually. I do so every two weeks. It was good, because I had forgotten to transfer the money from savings for a few the purchases on the credit card this past month. The credit card whose payment is automatically made on <i>Wednesday.</i></p><p>Yesterday, I put a birthday card out in the mail. I did not catch up on the dishes. I did not finish off the two pots I promised to do last <i>May</i>. The pots I got ready to do when I began the Grand Fall Migration last Friday and left the two donor sedums plants downstairs instead of taking them from the front porch on up to the solarium. I did not make the pots Friday, Saturday, Sunday, Monday, Tuesday, Wednesday, or Thursday. I hope to do so today. Maybe. The pots are ready. The donor plants are here. The pruning scissors are here. The rooting solution is here. The mulch is here. It will take me all of about 10-15 minutes. SIGH.</p><p>Leslie popped by yesterday. She arrived before me and napped. That warmed the cockles of my heart, because I have been telling her that she could do that anytime she wanted. With the market so hot in Fort Wayne, sometimes she has unofficial offers before a house is even listed. It is rare for a house to stay on the market past a couple or three days. She has been working at breakneck speed since last year, without the usual break over the winter. </p><p>I had received a $10 DeBrand's gift card. She has oodles of gift cards. I was hoping she would trade me chocolate for food. Sure enough, she did! I now have a $10 Chick-fil-A gift card. So, instead of chocolate I have never had, I get to have a salad I normally wouldn't buy because of the cost but really, really enjoyed once. I am happy and she is happy. Trades are wonderful. I wish I lived in a place (the south) where trades were more common.</p><p>I have an appointment the 11th with one specialist and the 12th with another. After that, I am hoping that I can take a break from doctors for a while. It has been exhausting just doing physical therapy twice a week, much less all the doctor appointments on top of that. </p><p>Even though I just said I am getting nothing done, I would like to clean my home a bit.</p><p><br /></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-84237602940202061492020-10-27T03:15:00.004-04:002020-10-27T03:15:32.864-04:00Crushing fatigue...<p> </p><p>Saturday I got out in the yard for the first time since I fell ill in February. The work makes my soul sing and warms the cockles of my heart every time I lay eyes upon it. I shall post photos later, even though it isn't much.</p><div style="text-align: left;">I came inside. <br />I fed Amos. <br />I ate. <br />I slept 20 hours. <br />I woke. <br />I putzed around. <br />I slept another 4 hours. <br />I putzed more. <br />I went to bed for the evening. <br />I slept 14 hours.</div><p style="text-align: left;">I am exhausted.</p><p>I have been ever since I have been ill, even more so than my normal exhaustion from being chronically ill. The crushing fatigue is really no better. I fall asleep at the drop of a hat once I do something, anything, being it physical or mental labor. I engage my body or mind and I have to rest. Hours of zonked out sleep. Dead to the world. No say on my part. I fall asleep whether I want to or not.</p><p>Sunday, the reason I slept 20 hours is that when I am that exhausted, I have to sleep until the dizziness is gone. I get this dizziness in my fatigue that makes getting up actually pretty much impossible.</p><p>Right now, I'm still on the sofa, having been trying to stop sleeping here long enough to get up to bed. I need to get up there by 5:00 AM since the heart monitor is back up there now. Amos very much prefers it. And is it better for me. Besides, there are fresh sheets up there that have only been slept in once!</p><p>But I come home from physical therapy or some other medical appointment and the work of getting dressed and going out has me exhausted. It is all I can do to feed Amos and myself. I then often fight falling asleep or give in and sleep the evening away. Wake for midnight meds. And then doze until I can drag myself upstairs. Well, sweet talk Amos outside and then upstairs. Amos is quite good at keeping me company in my exhaustion.</p><p>I want my half-energy back!</p><p><br /></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-27035711229071304872020-10-22T16:33:00.001-04:002020-10-22T16:33:21.835-04:00Always...<p> </p><p>I cannot think of the word right now that words like "always" are. That is an example of my brain not working that breaks my heart. Anyway, you are not supposed to speak in those kinds of words. Because no one is ever "always" or "never." It is definitely not the way to fight.</p><div style="text-align: left;">But I will always be filled with shame in the very core of me. <br />Age three was too young.<br />Nothing has changed.</div><p>The echocardiogram was a shambles yesterday. I am still a shambles. I am filled with shame. Walking around reliving over and over the touch from them because I can still feel the touch from yesterday. I have not yet found a way to break that flashback completely. I think I have and then it comes flooding back. My chest is that way. There is too much there that I cannot contain. </p><p>Not now.</p><p>Two weeks ago ... and a bit. I was getting ready for my appointment and the call I had was not with my therapist but was with the center telling me she closed her practice. No warning. No goodbye. <i>She promised me that she would never do this to me, that she would be with me through the whole way.</i> Here I am, flayed open. And I am left alone, unworthy of help once more.</p><div style="text-align: left;">You cannot trust <i>anyone.<br /></i>I will <i>never</i> try again.<br /><i>How do I live with the truth of me unburied??? </i></div><div style="text-align: left;"><i><br /></i></div><div style="text-align: left;">I babbled a mile a minute during physical therapy on my hands just now to get through it. My therapist was surprised. Amos wasn't fooled. He was worried and agitated and wanted to be against my chest the entire time, which isn't possible during physical therapy on my hands. It was a mess.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">I am a mess.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Hiding that is <i>exhausting.</i></div><div style="text-align: left;"><i><br /></i></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-72782612614144358542020-10-16T02:12:00.000-04:002020-10-16T02:12:54.230-04:00Lessons from the field...<p> </p><p>"At Play in the Fields of the Lord," in my mind, is a film based upon a book by the same title, based in the Brazilian Amazonian River Valley revolving around a Niaruna village. In the name of progress (and the always accompanying greed) their lives and culture are threatened, which is a major thread of the story. Also part of the weaving are missionaries who go native, marital infidelities, insanity, death, the worship of nature, evangelicalism vs Catholicism, disease, betrayal, and grief beyond measure. You end up painfully caught between the mess of human relationships and the reality of our sinful nature and the inexorable outcome you just know is coming for the Niaruna people. It is a most uncomfortable film.</p><p>I have never forgotten the distress of that film.</p><p>To me, none of the missionaries take seriously their work, so I find the title rather apt. Behind everything is this sense of self focus or adventure, almost for some a setting up some sort of playhouse in the forest. Harsh, I know. I did read that the movie should have stayed a book. Given how strongly I responded to the movie all those years ago (just look up the actors!), I cannot fathom how much the book could drag you down the rabbit's hole. Of course, Hollywood wouldn't know the Word of God if it hit a writer on his head. A passel of writers would still be scratching their collective heads about vocation. So, of course a novelist or a playwright would not understand the ineffable value of a field of the Lord. </p><p>Oh! For they are precious indeed!</p><p>I am so lost that I thought I started watching those videos this last spring. I guess it has been more then a year now, because I went to go looking for a blog title for a date range and there was nothing in the spring. Hello, Myrtle! You were too ill to stream or write in the spring!! I did see a post entitled "I Am An African Man" from October 2019. 2019! Oh, my ... the time.</p><p>What I was watching earlier was about change, which is not really the topic I wanted to note now. At the end, he said that what they had learned from the past five years was that you have to respect people: </p><p><br /></p><p><span style="color: #38761d;">"If you want to help me, I must feel respected and appreciated." </span></p><p><span style="color: #38761d;">And that's what we learned in the field of jiggers. You meet this person with jiggers and you try to despise them and they reject your help and they tell you, </span></p><p><span style="color: #38761d;">"I would rather have my jiggers than have someone shit on me. You come to my home. I know it has jiggers, but it is still my home. You must respect my home." </span></p><p><span style="color: #38761d;">And that is how we have survived and learned to work with people. We appreciate it and people come to where we are to be helped. </span></p><p><span style="color: #38761d;">~Jim NDuruchi, Emmanuel (7) HUGE JIGGERS Dug Out of Him (2 of 2), March 16, 2016 </span></p><p><br /></p><p>It might be hard to fathom, but you need to be able to exchange the word "jiggers" with <i>anything. </i>Alcoholism. Hoarding. Gambling. You HAVE to respect and appreciate the person if you want to help him or her, because you are respecting the life that God has created. There is a future in which you are investing, you are cherishing, you are helping God to save. Even if that future will be spent in a prison. It is still a life that can be lived with honor and value and love and purpose. </p><div style="text-align: left;">Pot calling kettle black.<br />I know.</div><div style="text-align: left;"><br /></div><p style="text-align: left;">Anyway. I really liked this bit and noted it down in my collections of observations about people that I am collecting from the videos. When you spend years helping people in the condition he and his team do, you cannot help but make observations about human nature. I find it fascinating when he does, especially when he couples them with quotes from the Living Word.</p><p>I can tell you from experience, my current GP and the therapist I've had the past nearly three years both were the first who showed me that I was respected and appreciated as they helped me. It is extraordinary. And empowering ... once you gain your courage. I am/was even valued by them for what I can/could offer. Just because someone is broken in one way, doesn't mean that that person might not end up helping you back!</p><p>Besides, for me, in helping others myself, I have always been, by the end, far greater blessed myself than they could ever have been.</p><p><br /></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-43206407731005489682020-10-15T02:17:00.002-04:002020-10-15T02:17:34.772-04:00Third night in six...<p> </p><p>...of battling my stomach. Since adding meds, it's felt like a holding action. The new GI doctor said we cannot schedule a look-see until December. I am losing my appetite again. Just looking at food is exhausting for knowing that I have more than a good chance my stomach might not like my eating.</p><p>I am weary of my body punishing me.</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-54279931734196758682020-10-13T01:26:00.002-04:002020-10-13T01:26:28.264-04:00Four things...<p> </p><p>I wrote down four things I wanted my GP ... I should start calling her my General Contractor ... to try to help me address: </p><p></p><ul style="text-align: left;"><li>My stomach</li><li>The pain in my right hip?</li><li>The pain in my muscles</li><li>The pain in my left foot</li></ul><p></p><p>Right now, at this very moment, I am trying very hard to not desire the amputation of my legs. The pain in my thigh muscles is ever so difficult to endure. This is especially true because, at the moment, my hands are mostly useless for massaging the pain. The massaging is mostly helpless, but it is something to do besides just lie there and endure the pain.</p><p>We stopped Lipitor in case it was that medication, but nothing changed. I, personally, do not believe this is a side effect, because it comes and goes and moves from muscle group to muscle group, much like the nerve flares. It is a muscle flare. Not cramps. Aches. Deep aches. Almost bone-breaking muscle aches. At times, I am certain I cannot bear another moment and confess I clutch Amos ever too tightly.</p><p>And, right now, at this very moment, I am having nerve pain flares in my hands. Lightening strikes at the base of my palms, moving down the inside of my wrists. More so on my left wrist, with pain also shooting up into my ring finger.</p><p>And, right now, I have the ever present numbness and tingling in my lips.</p><div style="text-align: left;">And,<br />And,<br />And.</div><p style="text-align: left;">I was reading someone's writing that started with how good God is. Shame and failure immediately flooded me. It is not that I do not believe that God is good. It is that I am being assailed on so many fronts by my own body and in so much pain all the time on top of everything else in many different ways that I do not start with God is good. </p><p>I start with: <i>How do I get through this moment?</i> Often, that is followed by spoken gratitude for the gift my Good Shepherd has given me to help me: Amos, the sight of a bird, a flower, the taste of bacon, rain watering my new trees, the opportunity to help someone, the sound of water in my fountain, the sight of a tree frog, the smell of wet mulch, etc. So, just maybe, I end with God is good, I just use different words.</p><p>I did, goodness, more than a year ago now, I think, start saying "Thank you, Jesus" for every good thing that I receive, both tangible and intangible, everything that I experience, because James teaches that every good thing comes from God. I wanted to hear the thank you in my own ears to teach myself to be more grateful. To be my own example, if you will. I believe it worked.</p><p>But, back to my original point: I bewail my misery first. [I really need to find that bit in the Large Catechism that uses that phrase.] I bewail my misery first, because even though I do strive very hard to enjoy the life I have in-between the major flares, even that existence is fraught with a body that is assailing me on all fronts. Is that the wicked way, or one of them, from Psalm 139 that God needs to root out? I do not begin my writing in places that God is good?</p><p>SIGH</p><p><br /></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-45863229005612865992020-10-13T00:52:00.000-04:002020-10-13T00:52:09.953-04:00Do you think...<p> </p><p>... if I go back to Walmart and say that, at 53, I am a lifelong expert on peanut brittle and this batch is bad, I could get my splurge money back?</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-78440507477162171902020-10-08T23:59:00.019-04:002020-10-09T02:59:20.837-04:00Splurge failure...<p> </p><p>Peanut brittle requires salt! I treated myself to some at the Walmart bakery to try and raise my spirits. I ate far too many bits of it trying to figure out what was wrong with it. Finally it struck me. There was no salt on the peanuts or in the brittle or however it should be. No contrast. No sweet, really. No peanut taste. Anemic. And far too expensive a failure to me. My battered being really cannot take another blow. I don't even have a workplace where I could bring in the nearly full container to offload its contents to a hungry hoard. I <i>loathe</i> throwing food away. Especially something that was supposed to be a treat. The story of me.</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-13127424415250079552020-10-08T00:07:00.000-04:002020-10-08T00:07:19.125-04:00The two Myrtles...<p> </p><p>There are two Myrtles in truth. There is the one who very seriously wants to die, who thinks about it every single day. And there is the Myrtle who trudges on.</p><p>I do not care for animation. I do very much care for Claire Crosby. She, and her family, is a bright spot in my life. A while back she sang a song with which I am not familiar with because I do not care for animation. I do particularly care for her version of the song having now Googled the original.</p><p><br /></p>
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<span style="font-family: inherit;"><i><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">I've seen dark before, but not like this</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">This is cold, this is empty, this is numb</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">The life I knew is over, the lights are out</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">Hello, darkness, I'm ready to succumb</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">I follow you around, I always have</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">But you've gone to a place I cannot find</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">This grief has a gravity, it pulls me down</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">But a tiny voice whispers in my mind</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">You are lost, hope is gone</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">But you must go on</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">And do the next right thing</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">Can there be a day beyond this night?</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">I don't know anymore what is true</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">I can't find my direction, I'm all alone</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">The only star that guided me was you</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">How to rise from the floor?</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">But it's not you I'm rising for</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">Just do the next right thing</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">Take a step, step again</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">It is all that I can to do</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">The next right thing</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">I won't look too far ahead</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">It's too much for me to take</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">But break it down to this next breath, this next step</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">This next choice is one that I can make</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">So I'll walk through this night</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">Stumbling blindly toward the light</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">And do the next right thing</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">And, with it done, what comes then?</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">When it's clear that everything will never be the same again</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">Then I'll make the choice to hear that voice</span><br style="caret-color: rgb(34, 34, 34); color: #222222;" /><span jsname="YS01Ge" style="caret-color: rgb(34, 34, 34); color: #222222;">And do the next right thing</span></i></span><br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-22931349580662680802020-10-06T19:34:00.001-04:002020-10-06T19:34:19.574-04:00My lesson for today...<p> </p><p>You really cannot trust anybody.</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-86850351465045161812020-10-05T23:30:00.001-04:002020-10-05T23:30:16.192-04:00What was that...<p> </p><p>For five months, since I've been ill, I've had this pain in my chest, left of center over my heart. Periodically. Regularly. Sharp. Stays for a while. I don't know how long.</p><div style="text-align: left;">Yesterday, it came again.<br />Then it began radiating.<br />And increasing in pain.</div><p style="text-align: left;">A part of me wanted to go to the ER, if nothing more than for an EKG and an troponin blood test. But I didn't want to be admitted. And I was just a bit too scared to make a decision. I wasn't having any jaw pain, back pain, nausea pain, or pain in my left arm.</p><p>Instead, I texted my doctor. Then, later, I messaged my cardiologist. As a result of the latter, I am going to see my cardiologist on the morrow. I am not sure if it is just to explain what is happening or if it is to schedule testing. Sometimes, when new developments of my conditions arise, he explains them to me bit by bit. I might possibly be one to worry with my body attacking me right and left over the past three and three quarters years. So, my main doctors all have taken a when-we-cross-that-bridge approach to bringing things up to me. Mostly, I don't mind.</p><p>I do wonder ... what was that!</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-80430064187912298452020-10-01T23:59:00.001-04:002020-10-02T00:45:21.376-04:00A sentence...<p> </p><p>A sentence.</p><p>I told myself if that is all I could write and post, I would do just that. But, instead, I let my own world of pain overwhelm me once more. Well, I've come up for air, determined to turn a corner even if a corner is not there. <i>Can one make her own corner?</i></p><p>Did you know that my right jaw pops out of place? No, of course you don't. I haven't written that. Another agony. I cannot even pursue that. It would not be covered by insurance, I believe. The growth I have on my tongue, it turns out, will be, at a measly 60%. I know, I should be grateful for that much, but when I think down the road to the biopsy and more, because it is growing .... But I digress. The jaw joint is yet another oral surgeon and would not be covered and a first visit would be more than the $100 I paid for the growth on my tongue (two of my medications can cause cancer). Do I even go to find out what the whole shebang would be to repair my jaw??</p><p>Daily ... all the day long ... I gently open my jaw to see if I will need to move it over. How long, I wonder. How long can I live like this before I won't be able to push it back in place so I can unlock my jaw? SIGH.</p><p>Anyway, I see the new gastroenterologist on the 13th. Another new specialist (my first left the practice). Another problem with my body. </p><p>I am going, though, because my stomach has become more and more my enemy than my friend. The nausea has worsened, though I cannot believe that is even possible. That is not enough to bother me. No, I now have pain and cramps and a strange sort of illness and gurgles that sound like they should be coming from a bear or even elephant. Not all at the same time. No rhyme or reason. Though, if I wake up with nausea, it will stay the day even if I take Zofran round the clock.</p><p>This summer, when I saw my cardiologist, he suggested that I try focusing on one thing at a time, perhaps because I had been so ill and would be a long time recovering (I still fall asleep at the drop of a hat and poop out after the smallest bit of errand running or puttering out in the yard). He advised that I focus on getting my hands fixed, at the time not even having a date for the surgeries. I liked his advice.</p><p>I cannot follow it now, though, because my hands will be a long time recovering, and there are days when I do not believe I will get through the very next second with my stomach. Somehow I do. </p><div style="text-align: left;">I believe I will be having an endoscopy.<br />I am afraid to be put to sleep again.<br />Deeply.</div><p>I know it needs to be done. Something is different. My reliable, cast iron stomach has failed me. It is crying out for help. I am now on two new medications and have tried a fungal antibiotic and steroids. I think I have an alien. One doctor wonders if I have an ulcer that I cannot feel, since one of my medications took away my sense of hunger years ago. Maybe it took away other stomach sensations. A valid hypothesis. I am on meds, as I wrote, that cause cancer. Two of them. I think I am too bovine for it to be that. Although ... I have lately found myself eating to keep the nausea at bay since it is worse when I am not eating than when I am chewing and swallowing. A poor treatment plan on my part. Another doctor believes it is a massive case of gastritis from the long illness and will take eons to get better with large doses of the Prilosec I am taking. We shall see ... eventually.</p><p>There is one anesthesiologist, Dr. Mistric, who is skilled at putting me to sleep and waking me up. She's done it three times, where others have fumbled. I've asked for her whenever I can once I tracked her down. I've already started my pitch. If you pray, you could begin praying for her to be my sleep doctor on this.</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-41574171415211676832020-09-18T00:05:00.000-04:002020-09-18T00:05:13.995-04:00My Fluffernutter<p> </p><p>I am not a cat person. At all.</p><p>I have many stupid cats around my house and in my back yard. In my FENCED back yard. Today, this cat was hiding behind a plant next to the back steps. We were almost to the back steps when this orange cat darted out and attacked Amos. His right eye and nose were punctured. He is hurt. And I hurt for him. </p><p>And I am angry.</p><p>I want to be safe in my own house and in my own yard. I am tired of community cats. I am angry that by attracting birds so that I can be comforted by them and their birdsong, I have attracted community cats who then chased away my birds.</p><div style="text-align: left;">They took away the joy of my back yard.<br />And its safety.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-37575291861468343622020-09-16T23:59:00.000-04:002020-09-17T01:06:56.615-04:00PVCs...<p> </p><p>Ever since the long illness, PVCs have become a part of my life. February 20th was my first symptom. Three days later I had severe viral bronchitis. Eventually I had viral pneumonia. Then I had pleurisy. Along the way, the strain of all this brought PVCs. And stressed my nervous system, too. My stomach is as yet undiagnosed, so it could be the illness, it could be from a rather strong antibiotic I had previous, or it could be from something else.</p><p>Today, just before two in the afternoon, I had the worst PVC "attack" to date. I vomited from it and was still nauseated when it was over. I am fairly certain the palpitations were the PVCs, because I am fairly certain my pacemaker was doing the ventricular pacing. It was forcing me to stay at 120, with those terrible flip flops happening more strongly than I have ever felt, like a war was going on inside me. When everything subsided, I leaned over and grabbed my Zofran, cleaned my face up with my water bottle, took the med, and lay down. I was so very shaken and weak.</p><div style="text-align: left;">I spent hours trying to recover from that. <br />I still feel rather horrible.<br />I just took more Zofran, remembering it's long past the 8-hour window.</div><p>I sent a message off to my cardiologist not too long after. I think. Maybe it was a while. Before the office closed. I did because if their wasn't a warning on the monitor (if the nausea wasn't from a heart event), then he could look at the monitor to see if it was a PVC and how long it lasted. They had calmed down a bit by July. And Becky's visit made them rare. This one sideswiped me! It's intensity terrified me. I hope he does his "It's just fine routine." where he goes on about the crappy disease I have and this is precisely why he stuck a pacemaker in my chest that comes with a free home monitor! Lucky me.</p><p>My head aches. It's been aching for two days now.</p><p>I'm scared to go to sleep after what happened this afternoon. I wish someone would sit in the recliner in my room and read (listen to me breathe).</p><p><br /></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-46269615115314881292020-09-11T23:59:00.000-04:002020-09-12T00:40:54.164-04:00Sleep, sleep, and more sleep...<p> </p><p>I wanted today to be a lazy day of labor. It was a lazy day of sleeping instead. I did see Leslie, and we spent some time out in the Haven. But she left and I ended back asleep. I am frustrated. It was just like back when I was first waking up from being so ill. As if I am back sliding. But perhaps it is because I haven't been sleeping much with the pain in my hands and wrists. Dr. Bryan and I have been talking in the phone at long last. She suggested that I try voltarin gel. I have been. I think that is helping, along with the ultrasound treatment I received in PT yesterday. So, I have been catching up on my sleep, perhaps???</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-2844663596944849012020-09-09T23:59:00.000-04:002020-09-10T03:01:57.444-04:00Micro...<p><br /></p><p>I told myself that once I got up the courage to come back I would stay. And that I would because I would start microblogging. I am most certain that is actually a thing out there in the world, but for me it means that I will just splash upon the page something short, if not sweet, even though I prefer to wander about my thoughts upon the page. Though brief is not a word anyone would think to use about my posts.</p><p>I had a terrible stomach flare, such as I get ever since I had this too-strong-for-me antibiotic early this year, last night and did not sleep much. So I was under slept and grumpy this morning, reluctant to get up for my appointment. Amos, my nursemaid at home, was also under slept and grumpy this morning, even more reluctant to get up for my appointment. I had to DRAG him off the sofa, after two unsuccessful tries and a colossal amount of snipping, which made me even more grumpy and which made me forget the most important task of leaving with him in the morning.</p><p>I remembered that task too late whilst waiting for the nurse to come fetch me from the waiting room.</p><p>There I was, weary, seated with Amos at my back, scanning the room. To my horror, I saw a pile of brown plops where I had been waiting on a patient who had gotten up from his seat to tell a story before I could move forward to check in for my appointment. Amos had made not a sound. Nor had he asked to go out before we left. Once in the car. After the half-hour drive to the appointment. Or before we headed into the building (we always make a pit stop before and after appointments, something he now does without being prompted). </p><div style="text-align: left;">I was so embarrassed.<br />The receptionist was not pleased with me.<br />I asked for supplies, which I got, to clean it up.</div><p style="text-align: left;">My appointment was dimmed by that, but the sincere care of my pulmonologist for my whole being soon brought me out of my funk. She asked about my surgery and wanted to see my scars and to see where my pain is worst. She wanted to hear about my stomach and had two ideas for me. And then she listened to my pulmonary review, with my one bad spell whilst Becky was here and the ongoing pain in my lower throat. She had an idea for that.</p><p>She spent a very, very long time with me working on helping me. The medicine she chose, the immunosuppressant, wasn't the only option for lungs. She worked on choosing the best option for Sjögren's presentation in my whole body, not just my lungs, even though that is not her job. And she worked with and desires to continue to work with rheumatology and neurology when it comes to treatment where the medications can complement or work against each other, willing to take suggestions from them for changes if need be. So, I have a drug that is helping my teeth and my eyes, as well as my lungs. It took much, much longer than she thought it would to start working and she was ready to give up on it, but the medication started working and has show evidence of helping more and more, most clearly with my eyes as a bellwether for how it is affecting me elsewhere.</p><p>I realized today that she likes to solve problems for patients, even those not her own. So many specialists will not stray one iota outside their lane. She drives in all lanes, going in both directions, and doesn't mind straying onto the shoulders if need be.</p><div style="text-align: left;">I like that.<br />I like people like that.</div><p>So, my thought about microblogging was to just write. Even if crazy brief (which this wasn't). Even if I cannot remember what I am trying to say and cannot finish. Even if I cannot make it make sense and am too tried to keep trying. Just try to capture at least something of the day.</p><p>Did I miss yesterday? PT is going to stink. Breaking up scar tissue beneath my incisions is called "scraping." Did you just have the same reaction I had hearing that word when you read it? That sounds insanely painful. I do get some pain therapy, which will include ultrasound and, hopefully, at least one other soothing processes.</p><p>It was mostly assessment, which was painful. Then I was given homework. The truth about PT is that you will only get out of it what you put into it. In sum, you have to the homework if you want to get better. The homework stinks.</p><p>I started slathering Voltaren gel on my hands. I am hoping it will make a difference. Part of me wonders if this will be the pain that breaks the camel's back. </p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-66631979126129487082020-09-07T08:49:00.000-04:002020-09-07T08:49:42.604-04:00What can I say...<p> </p><p>I know now why all the other dysautonomia bloggers went away. It is just too awful. Too much sickness. Too much pain. Too much loneliness. No one wants to hear it. For me, with Sjögren's, it's worse. Although, I have learned that Sjögren's is my egg to neurocardiogenic syncope. Autonomic dysfunction (dysautonomia) comes from autonimmune disease. That is the cutting edge study. But does it really matter? In the end, knowing hasn't changed my treatment. I have just received more diagnoses as my body has attacked me in more and more insidious ways.</p><p>Recently, Sjögren's has essentially given me the equivalent of carpal tunnel syndrome or at least made me need the surgery for it in both wrists as the nerve was being quickly damaged and I was losing feeling in my fingers. I am not healing well from surgery. I am in pain. Is it slow healing? Is it Complex Regional Pain Syndrome? Is it Small Fiber Neuropathy? A combination thereof? Take your pick. I am miserable.</p><p>I took a look at my kitchen counter, a veritable disaster since Becky left on August 25th, and thought Hollywood could use it in a movie about a woman who had given up on herself and the world. Piled with food bits and dishes, since the dishwasher was full, and the sink, I had no more utensils or dishes or glasses to use. Amos had woken me for meds and his breakfast and instead I girded myself to finally tackle emptying the dishwasher, refilling it, and doing the hand washing. Seventy-three minutes later, things were more decent in my kitchen.</p><p>I want my hands back. It's been since July 31st since I lost my right hand. I know that is not that long, but living alone is it an eternity. My dearest friend came and helped immensely, but I am back alone and can do hardly anything. My neurologist said my hands should be weak and the surgeon's physician's assistant said my hands should not be weak, but they are. And I have not been a wimp about trying to move them or use them as I was told. Not from the very moment I was wheeled into recovery the first time.</p><p>I want my hands back.</p><p>I start physical therapy tomorrow. Since I have scar tissue beneath my incisions in both hands that has to be broken up, I already know it is not going to be pleasant. But I have terrible, terrible cramps in my hands all day, every day. The PA said that the therapist can help with that. I am fervently hoping that is true. I think Amos is, too. He is most tired of my moaning and groaning, my whimpering and weeping now that I am alone again.</p><p>I miss writing here. I miss writing.</p><p>I have been listening to this man who is serving folk in Kenya. Folk who are suffering in the cruelest way. Folk who are so very poor. Anyway, he was talking about Covid-19 and said something that struck me. It was from a video back in April, but I just watched it. He said something along the lines (I need to rewatch it) about how we shouldn't let it rob us of our joy, the joys in our lives. We do have joy, because of the grace that God shows us every day. Like the silly little things that Amos does that makes me burst out laughing after over nine years even when I am sobbing in sickness because he is just so adorable and just so caring of his puppy momma. Covid-19 is from our enemy. He didn't mean China. He meant the devil. Don't let the lion that prowls around us trying to attack us win.</p><p>I have been so very ... upset ... about so very many things about Covid. I was ill for just over five months with pulmonary illness that was so hard on me that it bothered my heart and my nervous system. It is still bothering me. Two of my doctors believe it started with Covid, or rather that Covid was the precursor to the viral bronchitis that was my downfall. Whatever the case. With now cranial hyperhidrosis, wearing a mask is a great misery to me that ends with difficulty pushing air in and out a sodden mask and pain in my throat and chest as I do so.</p><p>Being chronically ill, I have learned so very much about the Word of God, especially the Psalter. I would not choose this life, but I cannot say it has been 100% wretched. Physically, yes. But ... what I have learned .... Listening to the man serving others reminded me of that. </p><p>Gosh, I'm bungling this, because I am NOT a suffering saint. I despair of that more than anything else in this entire world. I despair of my doubt of my ability to believe. What does that really mean? I mean, I know what I do believe. But there are some things I struggle to believe. I can write about that later. Still, I believe the Word of God is powerful, performative, is and can do all that God is and has done as the Christian Book of Concord teaches.</p><p>I've been letting Covid-19 take that away from me lately. How I feel about masks and all the other ways it is changing our world, my world. What it is taking away from <i>me</i>. I was reminded not to give my enemy that power because Jesus has the victory over Covid-19, even if it doesn't seem like it right now. Even if I cannot understand it.</p><p><i>Well, crap Myrtle. I guess Jesus has the victory over your hands, too. </i> How can that possibly be? I mean, Ultimately, if I do get to have an eternal life with Him, that would be a victory. But now? I want to be that suffering saint who praises God for the hardship of daily pain, of cramps so bad that sleep is hard to come by, dozing here and there, even when your bestest friend is here and you are wasting precious time with her when she's awake because your nights are spent battling pain.</p><p>Argh. I'm just rambling on and on. Not much worth reading.</p><div style="text-align: left;">I do want to write again. <br />I want to write for me. <br />I need to write for me.</div><p><br /></p>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3113897.post-13429753000128056422019-12-13T23:59:00.000-05:002019-12-14T04:19:04.602-05:00Just medicine...<br />
Some days is it all I can do just to take my medicine.<br />
I do not understand that.<br />
At all.<br />
<br />
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. <br />
<br />
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.<br />
<br />
That was it.<br />
<br />
Eight trips to the kitchen to swallow pills.<br />
Two rounds of neublizing asthma meds.<br />
Two rounds of neublizing sodium chloride.<br />
Two rounds of nasal medication.<br />
Four rounds of nasal treatments.<br />
Two rounds of eye medication.<br />
Four rounds of eye treatments.<br />
Four rounds of brushing my teeth.<br />
Two rounds of fluoride rinse.<br />
One round of fluoride trays.<br />
<br />
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.<br />
<br />
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. <br />
<br />
Just medicine.<br />
Just staving off all the ways my body is attacking itself.<br />
<br />
SIGH.<br />
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-19204842478851584802019-11-12T23:59:00.000-05:002019-11-13T01:24:05.434-05:00As I awake...<br />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?]<div>
<br /></div>
<div>
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!</div>
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<br /><br /><span style="color: #38761d;">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.<br /><br />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. <br /><br />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.<br /><br />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. <br /><br />I am no longer napping three times a day.<br />I can follow through on tasks.<br />I am brighter.<br /><br />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!<br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />Rejoice with me. At least those of you who suffer with me and pray for me ... now is your turn to rejoice with me!</span></div>
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<span style="color: #38761d;"><br /></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-87211704635485142842019-10-30T14:28:00.003-04:002019-10-30T14:56:30.108-04:00I am an African man...<br />
[I have been stuck on this for three days, so I am just going to post it.]<br />
<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
She really did lie.<br />
<br />
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.<br />
<br />
Where are his houses and his cars? <br />
Where are the luxurious items he would have bought? <br />
Where are his hidden bank accounts?<br />
<br />
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. <br />
<br />
Besides, as an African man, the Director is not required to defend himself.<br />
<br />
Ultimately, I <i>listened </i>to him.<br />
I spent hours and hours viewing his organization's work.<br />
And I considered who he is and his culture.<br />
<br />
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.<br />
<br />
<i>So, why am I blogging about this?</i> Because I want to cry out to the world, "I am _________"!<br />
<br />
<i>But what am I? </i> Not the question I ask myself. But what do I want to cry out to the world? <br />
<br />
<br />
<ul>
<li>I am someone with chronic illness and chronic pain who is living the chronic life. </li>
<li>I am someone whose body is attacking itself. </li>
<li>I am someone who is constantly facing loss and, therefore, constantly grieving.</li>
<li>I am a middle aged woman. </li>
<li>I am someone who lives with PTSD. </li>
<li>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. </li>
<li>I am a chief advocate of praying the Psalter. </li>
</ul>
<br />
<br />
But how in the world do I fit that in "I am an African Man."<br />
<i><br /></i>
<i>See me. </i><br />
<i>Hear me.</i><br />
<i>Learn about me. </i><br />
<i>Respect me by respecting the culture that is my life.</i><br />
<i><br /></i>
SIGH.<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-62564777717030594802019-10-27T23:59:00.000-04:002019-10-28T00:25:54.951-04:00Another loss...<br />
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 <i>never</i> 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. <i>Me?</i> I was staggered.<br />
<br />
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.<br />
<br />
I no longer trusted myself as a writer. <br />
That was devastating.<br />
<br />
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.<br />
<br />
<i>Now?</i><br />
<br />
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.<br />
<br />
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!!<br />
<br />
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?<br />
<br />
[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!]<br />
<br />
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 <i>hear</i> me when I try to speak of my grief.<br />
<br />
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. <br />
<br />
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, <i>much</i> 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. <br />
<br />
[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 <i>everywhere</i> now. SNIFF. SNIFF.]<br />
<br />
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.<br />
<br />
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!<br />
<br />
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. <i>See? Easy peasy, right?</i><br />
<i><br /></i>
The rest of grammar rules? They are slipping through my mental fingers. And I grieve. Deeply.<br />
<i>Will you weep with me?</i><br />
<i><br /></i>
<i><br /></i>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-7856787216753864012019-10-26T22:36:00.000-04:002019-10-26T22:36:05.060-04:00An example...<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
Yes, well, I just finished doing so.<br />
<br />
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.<br />
<br />
I forget.<br />
I forget.<br />
I forget.<br />
I am exhausted.<br />
I am exhausted.<br />
I am exhausted.<br />
I am exhausted.<br />
<br />
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.<br />
<br />
One thing.<br />
<br />
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.<br />
<br />
Coughing from an oft excruciatingly dry throat has taken over much of my days. And nights.<br />
<br />
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.<br />
<br />
Only.<br />
<br />
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?<br />
<br />
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. <br />
<br />
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.<br />
<br />
I need to ...<br />
<br />
AWK!<br />
<br />
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.<br />
<br />
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! <br />
<br />
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.<br />
<br />
Small steps.<br />
Distractions.<br />
Forgetting.<br />
Exhaustion.<br />
Frustration.<br />
<br />
All blend together to make just about anything practically seem like a marathon.<br />
<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-37864595022837910562019-10-09T23:59:00.000-04:002019-10-10T01:16:44.999-04:00Not I...<br />
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<span data-offset-key="e73ie-0-0" style="font-family: inherit;">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. </span></div>
</div>
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<span data-offset-key="c2t5d-0-0" style="font-family: inherit;">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.</span></div>
</div>
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<span data-offset-key="4eks9-0-0" style="font-family: inherit;">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."</span></div>
</div>
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<span data-offset-key="9471p-0-0" style="font-family: inherit;">Why am I telling you this? Lately, I have been thinking deeply about how he constantly talks about being blessed and receiving grace. </span></div>
</div>
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<span data-offset-key="4gvlj-0-0" style="font-family: inherit;">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.</span></div>
</div>
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<span data-offset-key="5eoem-0-0" style="font-family: inherit;">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.</span></div>
</div>
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<span data-offset-key="22onr-0-0" style="font-family: inherit;">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.</span></div>
</div>
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<span data-offset-key="467rf-0-0" style="font-family: inherit;">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.</span></div>
</div>
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<span data-offset-key="ck1e9-0-0" style="font-family: inherit;">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!</span></div>
</div>
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<span data-offset-key="e02ru-0-0" style="font-family: inherit;">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.</span><br />
<br />
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.<br />
<br /></div>
</div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3113897.post-4147550490846415772019-10-08T23:59:00.000-04:002019-10-09T04:28:11.305-04:00Hating pain...<br />
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.<br />
<br />
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.<br />
<br />
I deeply miss writing. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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." <br />
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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?<br />
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I do not hate life, itself. I do hate my life, but it is very much because it is a life of pain.<br />
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I hurt all the time.<br />
All. The. Time.<br />
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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.<br />
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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.<br />
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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.<br />
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So, I am off to rage against the pain.<br />
Bewail my existence.<br />
And clutch Amos.<br />
<br />Unknownnoreply@blogger.com0