Here's a poem I wrote about Sinead O'Connor. As you all know, she is a celebrity and musician that meant something to me. I shared this with my writer's group and they liked it.
Wednesday, August 16, 2023
Ode to Sinead O'Connor
UCTD [lupus related] Flares From Hell
I've been in bed for several days except getting up to shower once, go into my leg machine, watch several episodes of Star Trek and eat some food I was mostly disinterested in. I also talked to my husband and helped him with a printer problem.
Any food was eaten for the sake of low blood sugar. The less I eat the more the blood sugars go up which never made sense. They have been high this week. My last A1C was 7.2. It kind of sucks but isn't drastic.
I did attempt to "go out" one day to buy some painting boards--want to get them why I have a little money and felt like I was going to die, just from walking through the local art supply store. You get this feeling of fatigue, and trust me, I know the difference of heart failure fatigue and all of them, this is different, but you wish you could lay down on the ground and go to sleep. You trudge on thinking, "If only I could lie down there".
Sores popped out all over a few days in different areas of my body before this, they are the "sign" of what is to come. My forehead goes over the cliff with multiple red sores all over it. My mouth hurts from mouth ulcers, my toes hurt. My ears will ring more, and I lost some hearing but at least that's quieted to it's usual hum. My joints will start "going out". My left wrist feels like I broke or "injured" it [never did] and shooting pain goes through it. Other joints including a shoulder joint aren't doing that well.
The exhaustion has me lay flat as a pancake. You feel like death is warming over. I wrote in my journal, "I feel like I am dying" at 3am. Some may say "Go to the hospital!" No, it's better to wait it out. If the heart is beating okay and I can breathe, go to the bathroom and am not throwing up, I just wait. They say I have a 15% chance of Lupus, but the checked out rheumatologist said, last Oct, see him this Oct, "You are stable". I don't want to know what 'unstable" is.
I ate some food from hunger pain today and finally took a shower at 1:00 pm. I feel groggy. I had to call some bill collecter at 8:00am. All my medical bills are skyrocketing. My CPAP supply company wants 150.00 bucks, and 75.00 everytime I get new 3 months supplies of CPAP supplies, this means they are making 400.00 off one mask, a few cushions, a few small filters and a tube. Does everything have to be a rip-off nowadays? So I owe them money rather quickly. I doubt stress helps much with lupus related illnesses.
The fatigue just seems to be getting worse. It really is one reason I don't have much of a life lately outside of the Covid junk. I want to sleep all the time. Being deaf, I feel like I live in a groggy haze where I barely know what is going on. The doctors because I am up out of bed when I see them, just don't seem to have much to offer. "You have several conditions that contribute to fatigue." I turned down going to this one event due to the flare.
One of my toes keeps hurting too, and not sure what it is doing it. I had toenails even cut by a podiatrist thinking maybe my too long toenails were digging into an adjacent toe, but the pain remained. Nothing's red or rotting off, I've had husband examine them, I obviously don't see my feet that well. I bought a toe protector.
I went out yesterday finally, time for more domestic crap! I was walking into a grocery store yesterday, I take a cart to keep me upright to get into the store to get on a scooter, I felt like I was leaving my body from fatigue. Hopefully the functional doctor in a couple weeks has more answers.
Another weird symptom as of late is a metallic taste in my mouth, it's driving me crazy. I can still smell and have still worn N95s everywhere as of now. I blamed it on dirty air, but the AQI isn't that bad. The other day I looked up what can cause this and they said, low B12. Sometimes I worry Metformin is keeping my B12 way too low too.
The doctors aren't doing much, medical care is diminishing, all of us chronically ill know it too, it's been boiled down to bare bones. We are on our own. Most of us don't want to go to the hospital unless we are acutely dying. Some giant kidney stone is laying in wait, and they told me weird stuff about my bladder, but I told them for that scan, I didn't drink enough water, fearful of having an "accident", so they said, that may be all it is. Next scan will be in 6 months.
My father had Lupus too, wish someone told me when I was a teen, my parents hid so much from me. It may have explained some of how he acted. He worked until he dropped and was always angry. If I had known it would have explained a few things. They have no solutions for my UCTD besides a drug that can make me blind and do damage to the retinas I turned down. I'm barely functioning being this deaf, there's a point a person has to protect themselves. Lupus crap does not bring out the best in one's personality.
I'm trying to study naturopathy stuff, in regards to Lupus and UCTD, saw where one is supposed to take vit E. The flares do seem more frequent which worry me and the symptoms of dermatomyositis seemed to be worsening. When you get old, I think doctors kind of check out, they figure you're old anyway, and they see me as having lasted far past my expiration date. I think this does affect the treatment. I needed the world of pre-Covid to survive a lot better.
Wednesday, August 9, 2023
The Hive Mind Will Silence You When You Question Their Absurdities
Sometimes I get too outspoken. This above statement is because someone else was complaining about the unvaxxed and how they are angry at someone for not getting it, and refusing to deal with them. They were banning them from an event.
My God, all these years of repression, it's like it squeezes out. I'm more determined than ever to change who I am around. If I can't be me what's the use?
My friends who see through this crap are like an oasis in a desert from hell. This is part of a transcript on a Zoom on a group for those with autism. It's just a copy of what I said. Their instant reaction was to bring forth censorship. I used to like this group, it served some social needs, I even put on presentations and was the volunteer facilitator a few times, we did special interests, art, adhd and a variety of topics. It was interesting speaking to other people with autism who shared many of my same challenges. The group started off younger but then other people in their 40s and 50s showed up last year, so it was something positive for awhile.
However just for saying this, I got shut down and told, "You can't talk about this and need to be quiet." I complained about censorship and said, "Why do you have to shut everyone down for having a different opinion?" They did not respond. My mention of people having unknown medical conditions went unheeded too.
Then this one millennial aged man said, and remember this is 2023, "I don't socialize with any unvaxxed people, I refuse!" For this overt discrimination, no one spoke out. By the way I didn't mention my status, they know I have bad health problems. I said back, "That's discrimination and 'othering' people!" The subject was changed but then another early 50s man, said, "I agree with him, he has the right not to have unvaxxed people in his house and life!". This was too much for me, and I said back, "That's discrimination and it's wrong!".
I rethought those words because now I want to avoid the vaxxed myself. The "woke" types who still believe, there's no peace anyway. There is division here that can't be surmounted. Maybe they feel it. The unvaxxed are 'evil' to them, those who refused to submit and those who dare to question. Who thought society would grow this fascist in my life but it has.
The "regretters" are fine, but having been burnt several times now trying to live in peace among the "true believers" but having them squash me verbally and otherwise multiple times, forcing me into a place of suppression, I want nothing to do with them either.
After I argued with the second guy, I said, "I'm done." and signed off the group. I plan to never return.
They made a new rule because of me. This came in my email, the very next day. The "suppressive persons" must be suppressed I suppose.
"Hi, Autistic peer support group members!
By the way they talked about their vaccines and boosters constantly on the group. It wasn't me raising the topic. Someone else raised up the issues of banning an unvaxxed person from an event.One guy told us how one of his relatives worked at Pfizer. There are autistics on my "side" I've met online but not one person agreed with me. They do mostly live in a far more liberal town in my state.
It scared me that in this group, I was the only one who questioned any of it. I noticed this months ago. Some got bad health results too, and had Covid over and over but still were lining up for "boosters" even now. Oh that day's topic was Covid based, it didn't come up most of the time. The level of invalidation, disrespect and dismissal was too much. I won't be returning. This is an instant where one has to walk away silently. My piece was already spoken. Arguing with these people further is not going to do anything but bring me more trouble. These folks mostly live far away.
It's not just the autistics, I've been online groups where they shut you down and censor you. I noticed when I cited research studies, they always claimed they were "out of context". They would type things like "Enough", or then call me a "conspiracy theorist". They never addressed any arguments and stuck to ad hominems, using terms like "loon" to refer to any figure I brought up who questioned the narrative. I did notice no one ever actually presented arguments. They believed everything the mainstream media and Pfizer told them and questioned nothing. Humanity sadly reverts to denial to the max.
They get angry and go into instant denial and shut-down when I point out, the vaxx does not stop the damage from multiple Covid infections. All I have to say is if the minimizers aren't correct, this is not going anywhere good. [societal collapse and endless illness]. People aren't thinking anymore. I'm not Spock but one day I went on a rant how there's no logic anymore. Nothing I am told makes any sense.
I had a doctor I talked to. He was a friendly one, I liked. Sometimes one of my practices sends other doctors on the "same team". I still have a couple weeks until I see the functional guy. This doctor told me, "Its time for you to return back to regular life, no more masking and isolation."
"You can't live this way forever!"
I said, "I agree, maybe I've been a coward!" This is no life!"
Remember I wrote about how they wrote I was "hiding out from Covid due to my anxiety disorders" on my medical chart. I may take him up on the offer to give all this up, I am going to ask the functional guy for support, but then I asked, "Does that mean it's over?" I even asked him "Do you think it's been exaggerated or really has been over for some time?" He said, "Oh it's still out there!". I felt confused. I think he meant well. He probably was being honest, that, the only choice now is to go back to regular life and whatever happens happens. They have told me they are concerned for my mental and physical health from the isolation and he repeated this. I remember he said, "You need some socialization."
Part of me thinks about this, "well in the old days, no one hid in the house to avoid tuberculosis, and it was everywhere, they still lived their lives". I saw this argument presented by Naomi Wolf. However the other part of me thinks, "What happens to someone who gets long covid when they already have CFS?" My brain hurts.
More and more I think we are screwed. My intuition is screaming. Remember I said I'm good with patterns? It's hard to explain how my brain works. People have faded out of society. They are disappearing either from illness or death. People look sick like I did in my earlier days of autoimmune illness.
One friend told me she understood why I keep the masks on because I have so much medically wrong. She thinks Covid could be a con, and there was earlier "poisonings"/possible viral releases/other factors leading to illness and death but knows my position is so difficult, I need to know for sure before jumping the gun.
The autistic group mocked me at one point in the above fracas, because I said, "I've never had Covid, so how'd that happen?" speaking to their failed vaccines. They made fun of me then for living so isolated. "You don't go anywhere and wear a mask everywhere!" Actually on average I'm in 1 or 2 medical places now a week, and in 4-5 stores. I said, "Well at least I've never had it! Am I supposed to get it over and over like all of you?"
However this being "trapped" this way is scary. I am happy for my friend's empathy and understanding, that's been so rare in this whole mess. I cry some mornings and think "the powers that be ruined my life", but then I'm not one of their millions of murder victims who have died of this crap, virus or vaxx, or other factors.
Some online say the "normies" are going to wake up. I don't see it happening. I may make decision after I talk to latest doctor to just return to life and get the years I can get in and gamble on being immune. I have some bad health stuff that is as risky as any viruses out there.
However I am full of dread. The world is now insane and nothing they say makes any sense. I'm tired of the invalidation, the silencing, the censorship. My disenfranchisement from the left is now complete. I want nothing to do with the "wokes" and the authoritarian left. I still don't like aspects of the right wing, but this is intolerable as well.
I want to only be around people who allow me free thought, inquiry, and to use my own brain. Some friendships I did recover. I just decided to be quiet and remain polite in those cases.
I can't discuss an endless variety of topics with them. Others I am less close to, or who are newer, I simply have left the topic alone. My worse expectations are being fulfilled though about many people out there and what they have embraced and defend.
My decisions even about where to go for my future life are centered on finding small towns and areas, where people still have common sense and question the system a little bit, not to buy into absurdities. Maybe I am a "discriminator" because now I think of "What would be the least vaxxed place, I could find?" As I have said too if the minimizers/and it's a hoax people are not correct, we are screwed beyond belief. The vaxxes do not prevent long Covid or damaging results from endless reinfection.
There's something very dark, about people who have "othered" me and others over a medical product we believe can literally kill us. So there is destruction even being done to people's senses of self preservation. Notice we are being shamed over even the natural human inclination for self preservation. I'm thinking about that.
With my own choice in deciding what to do, I've only waited this long because husband has asked me to. We see life different because we have had so many intense health scares and I almost didn't make it out of my 30s. Some of these people I have felt like saying "Fuck off" to, but then I don't want too much of their attention or desires for revenge. It's better just to get the hell away from them. They support evil. They can snap their heels and Hail Pfizer and kiss my ass, but I learned long ago arguing with them is a waste of time.
Be careful if one day, we lose even more freedom here, sometimes in life people will fulfill your worse expectations. I don't feel safe around these kind of people anymore and well my intuition is screaming at me about that too.