Religion in a Nutshell

 

Christopher Tin conducts his choral work 'Waloyo Yamoni (We Overcome the Wind)'

The climactic finale to his song cycle 'The Drop That Contained the Sea'. From the European premiere of 'The Drop that Contained the Sea' at 'The Music of Christopher Tin' concert, Cadogan Hall, London, July 19, 2016. Performed by the Royal Philharmonic Orchestra and featuring the Angel City Chorale, Prima Vocal Ensemble, and Lucis choirs. Soloists: Jimmer Bolden, Allie McNay. Commissioned by the Orchestra at St. Matthews, Pacific Palisades, CA. Sung in Lango, lyrics from a rainmaking litany. Available to listen on all streaming and digital services. Vinyl for the original studio album (featuring the GRAMMY-winning Soweto Gospel Choir) is available at https://christophertin.com/store.html.

Wet Cat Wednesday

 

Hey Everyone

Yes I'm back. It was a bad time of it this go around but I'm pushing through. I still have painful RA episodes in my joints a few of my fingers are still swollen and the skin on the side of my pointer finger on my left hand is still split. I'm still wrapping that in a band aide with antibiotic ointment. I have a few bruises that appeared with no warning. I have no clue where they came from. But hey, I'm back.

What really put me out is the fact that I suffer with the Cutaneous Lupus (skin lupus). Sunlight affects me almost like it would a vampire. I have to avoid the sun and harsh lighting indoors. If I'm outside I have to wear a 70 SPF sunscreen cream or higher, a broad rimmed hat and long sleeved shirt or blouse and sometimes gloves. UV rays are the enemy and so is fluorescent lighting. I'm not making this shit up. It happens.

A week and a half ago, I was in a hurry to run errands and I started feeling pain in my fingers, wrists, elbows and shoulders. I blew it off because I feel like this all the time. Then the fatigue set in so quickly it felt as if I was blindsided. I realized I was having a full blown lupus flare and I could do nothing about it but hurry through and get home. 

Things escalated to say the least it felt like I was going to collapse right there in my car. What was the scary thing I started to cry because the pain and the brain fog was setting in. It was getting worse by the minute. The only thing that kept me going was that I had to get home, now. That was all I could think of.

When I got home the raised red patches on my skin started and then the itching and the lupus signature butterfly showed up. It was ugly, painful, and nothing could be done. I was in a full blown flare episode. I took 2 Tylenol because I was out of Arthriten, and a warm shower to cut the joint pain. I went online and told my friends I was having a "bad day" and I was going to be off line for a few days. Then I went to bed and silently prayed for sleep or death, maybe both. I don't remember. 

I spent the next four days and nights sleeping, not sleeping, and moaning in pain. Not eating. David got really upset and wanted to take me to the ER but I snapped at him, "and what would they do for me? They have no clue how to treat a lupus patient." That is the truth. 98% of all ER doctors have no clue what to do for women and men with Lupus. So I toughed it out and did what I could to make myself comfortable.

My symptoms were severe brain fog, I couldn't speak a coherent sentence if I tried. I just couldn't talk without reciting gibberish or wondering what I just said. Every joint in my body felt as if someone had my Voodoo doll and they were pulling body parts off of it. I had what resembled hives all over my hands, arms, legs, and neck. They were itchy as fuck too. At one time, I can't remember when, I got really cold and Raynaud's turned three fingers on my right hand crazy white then dark blue. The blood vessels were constricting for no reason, cutting off the blood flow to my fingers and they were feeling painfully icy cold. I had to hold them under running hot water to get them back to normal. That right there is not only unnerving but dangerous and it hurts like a muther when it happens. My fatigue was off the charts. I think fatigue and RA body pain were fighting each other to see who would win dominance over my body.

By Wednesday I was able to talk to friends on IM or email, somewhat. But I would get tired and go back to lying down and contemplating my existence. That happened in spurts. Then insomnia claimed the rights to my body and mind. I think I finally went back to sleep Saturday evening. I woke up and felt like shit all stiff and in pain but my mind was telling me to push through this shit. I wasn't going to let it have another day of my life. So I pushed. Hard.

I was almost back to normal by Sunday morning. My wrists and shoulders still hurt like hell right now and all I can do is take Arthriten for the RA joint pain. It helps for only 6 hours. It took 70% of my pain. Which is better than nothing. I can't take the meds for Lupus because of A fib. Hydroxychloroquine fucked up my heart when the last Rheumatologist prescribed it without checking to see if I had heart problems. It made my heart murmur worse. It caused my irregular beats. Lucky me. The rash is gone but some raised and thickened skin is still there and splitting because I can't seem to keep it hydrated with lotion. My fingers swell and hurt when they feel like I'm not hurting bad enough. 

All in all I feel like it's under control. Somewhat. A bit. For now. I guess. I've been a lupie for 40 something years, 33 of it undiagnosed or misdiagnosed. When I was finally diagnosed,  the doctor said I fell into the Mixed Connective Tissue Disease set. MCTD for short. Most Lupus patients have several different autoimmune diseases that will attack them in turn or all at once. I have Rheumatoid Arthritis, Raynaud's, and Fibromyalgia with C. Lupus. It's funny because Fibro can mask Lupus and vice versa.   I also have noticed weakness in my arms. I'm not sure what that is but I can't carry anything over 10 lbs. 

Being in my 70s now, it's getting harder to fight the tough fight. I know lupus kills and it scares me shitless. Kidney failure, heart attacks, brain seizures and the list goes on. Science is working on a cure and they are really close to it. I'm hoping I live long enough to see it happen. But until then. I have nothing else to do but fight this shitty disease along with the help of my family doctor. So yeah, I'm back. For now. With a pissy fucking attitude. Fuck you, Lupus.

Religion in a Nutshell

 

Note:

I need to take some time off again. Hopefully just a week or two to get through this lupus attack but who knows. The fatigue and pain is bad this time. It just keeps going on and on and won't go into remission. Take care everyone and I'll be back hopefully as soon as it eases up a bit.

Wet Dog Wednesday

Religion in a Nutshell

 

Wet Cat Wednesday

850 meters (HD English version)

Religion in a Nutshell

 

Wet Dog Wednesday

 

CGI 3D Animated Short: "For A Fistful Of Toffees" - by ESMA | TheCGBros

Religion in a Nutshell

 

On Renee Nicole Good

Wet Cat Wednesday

 

Telling It Like It Is

This is for Mike

 This is in response to Mike at Billions of Versions of Normal. He commented yesterday on my blog post Just a Brief Note, about the fingerless compression gloves I wear from time to time. If anyone is interested in where I got mine they are on Amazon. My first pair lasted about 14 months. But then I wear them 80% of the day.

I'm not getting any money to promote these gloves. I'm just letting y'all know the kind I wear to help stop most of my arthritis pain. If this post helps steer you in the right direction, then I did my good deed for the day. 

If you are interested in buying something like this then first measure all the way around the widest part of your hand with a tape measure to find out the size of glove you need. Note the above picture with the red arrow going around the hand. Make sure your hand is flat on a table and the tape measure is measuring around the knuckle area of your hand to get the right size. Don't pull the measuring tape tight around your hand. 

I wear medium. They have a great grip and don't hurt my hands. Pretty much almost stops the arthritis and carpal tunnel pain. They should not turn your hand red from constriction while wearing them. If they do then you measured and ordered the wrong size. You will be able to do most chores with them on. The pain will not be completely gone. You will still feel it but slightly muted almost numb.

I've been wearing this brand for little over a year now. I just got my second pair last month. I can wear them while cleaning, cooking, doing dishes, etc. but I wear the non sterile, non latex, powderless medical gloves over them to keep them clean and dry. They take a lot of wear and tear and you can hand wash and air dry them over night if they get dirty. Don't machine wash or dry them in a dryer no matter what.  Just a little dish soap and hand wash them, rinse them twice inside and out and lay them out on a small towel to air dry. Don't wear them when they are wet. Hope this helps some of you. 

Thanks for coming to my TED Talk.🤪

 

Just a Brief Note . . .

Yeah, I'm Back. But not 100%. Not right now anyways. Maybe this late spring or summer I'll be better. But right now my health is iffy at best. Lupus did a mean number on me and it started on the 20th of December and got so much worse on the 24th. I think I slept for almost 34 hours because I completely lost track of time at one point. The fatigue and brain fog is a killer. The arthritis in my lower back and shoulders had me walking around hunched over and in so much pain. I don't think I really got up to do much except direct David in making Christmas dinner. I made most of it before I got sick and froze it for easy preparation later just in case. It pays to plan ahead.

I spent most of my holiday time sleeping and lying on the couch. Thank the Goddess for shoulder heating pads. My arthritis seems to have taking hold and won't let go. I have realized that I now have my grandmother's hands. My knuckles have nearly disappeared and my hands are puffy and hurt like a muther all the time. I have to wear compression fingerless gloves most of the time just to do stuff. My kingdom for a reputable human body shop that takes American Express and has a 5 star rating.

Susan, my friend in California, sent me some really nice soft yarn and I have thoughts on making a head scarf for next winter. I love soft wool but this is made from alpaca. It's just the softest I've ever touched and it's a deep dark rich blue. I'm hoping to learn to knit when I get full use of my hands again this summer.

Well, that's all for me today. Fatigue is setting in again and pain is off the charts. It's so sneaky. I hate when it does that.

Religion in a Nutshell