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10 pm
My right leg is still swollen but it doesn't hurt nearly as much as it did yesterday. I'm still wearing compression socks.

I fell asleep shortly after writing my last entry. I've been sleeping for a very, very long time, all day and night. I got up to use the restroom. I got up to feed the cat and take medication, other than that I've been sleeping. I couldn't keep my eyes open.

11:48 pm
I went for an orange and got distracted. I cleaned the kitchen and vacuumed the floors. I had an orange, water and some tea.

Yesterday evening was scary because I wasn't sure I'd wake up today. I jotted a quick note to my friend Snow and closed my eyes. The leg was really bad yesterday.

One of the best things for edema is activity. I need to increase blood flow. I also need to be conscious of what I eat. I don't take a lot of sodium but at this time it's best to be even more careful with it. My stretches will be important. My vascular issues are Lupus related which means the root of the problem is in my blood and immune system. If I am to have any impact on this I'll have to do it from the inside out. I have to get that turmeric, ginger and black pepper back in me on a regular basis. I have to get cinnamon and garlic back in me as well as organic honey. These are vital. Funny how I can now see how vital it is after having stopped regular intake for nearly two months. ...continue reading "Lupus and edema. Dignity in life. Finding light."

Dr D called Friday around 11 am. I spoke to him briefly. He wanted to apologize and say that he has an opening next Friday for me to come in for a session. I then got dressed to go to the grocery store. My pain level has been high all day, high enough that I've taken pain meds three times. That's not normal for me.

Emotionally I'm raw. I'm physically tired. My right leg is good and swollen the way it used to look before I was on blood thinners. I don't have a blood clot but I need to remember to drink my teas daily. That's a strange thing to say but my depression has been deep with self care and normal activities taking a back seat.

...continue reading "Not an ordinary day"

I've looked around at apartments to see what will be available to me come June. It's not just that my landlord is despicable and thoroughly tests my faith, it's that this place is now well out of my financial abilities. That's too bad bc I would have dealt with the landlord situation.

I'm looking for an apartment with central heat and central air. I don't have that here. One of the things about CRSD and even Lupus is that we have to keep our body temperature pretty even. A window air conditioner doesn't do that nor do base board heaters. It's too cold for me in the living room but too hot for Jane in the bedroom so she's out there most of the time.

I haven't had tea parties this summer as planned bc of pain issues. I've been able to make greeting cards for people but I don't feel as though I've done the type of giving I wish to do. At the moment I'd have an angry self to offer which isn't that great, but I think there's a sense of loss because I've not been able to have the kids over or any families over. That was to be a big part of my summer and fall. ...continue reading "Home. Pets. Health."

Finding Up - The view from down hereThis evening I'll go to services at the Hall but at half point I'll be taken home by another Lupie. She's part of the group I work with. I would like to stay for the entire meeting but I know I'm not physically up to it.

When I go to the Kingdom Hall I sometimes sit in the auditorium with everyone else but there have been times when my pain level has risen to the point that I need to lie down, in which case I go to the library and roll out my exercise mat. This is the photo from the floor of the room.

No, you won't find me back there doing leg stretches. It's just more comfortable using the purple mat on top of the carpet.

I talk a lot about 'yoga' that I do but I should be very clear in that I don't practice yoga. I do stretches that assist in pain relief and build muscles in areas that have weakened due to chronic illness. In that spirit, I was taught several exercises tailored to my health situation. This is important because some of the exercises on line would work against me. Having guidance lets me avoid accidental harm.  ...continue reading "Finding Up. Amateur Herbalist."

I don't think Monday can get here fast enough.

This entry is going to get personal.

I feel my brain doing everything it can to run from remembering the other day in pain.

There's a problem one many on these meds know all too well. The meds make your stomach like cement. I could eat fresh spinach daily, eat fresh fruits daily, flax, flaxseed, straight up fiber daily and it would still be cement. That's a problem.

When I have one of those episodes where I spasm repeatedly from under my breast line to my knees, I end up vomiting and there's a chance I'm going to lose my bowels even if what's being moved is stone. This is painful. Chronic anal fissure is painful.  ...continue reading "Lupus and Restroom Issues"


It hasn't even been a year since I was diagnosed with CRSD.

CRSD extreme sweatingThis isn't normal sweating. It's not a hotflash, it's a 10 min or so flush of water in excess of what the body needs to cool itself. This episode lasted long enough that I decided to photograph it. Noteworthy is that I'm standing beside the air conditioner when this episode took place.

There's no certain time of day, no specific weather conditions I've tracked and no relation to hotflashes related to the change. Those hotflashes feel very different.

When it comes to extreme, excessive sweating and CRSD, I don't necessarily feel hot. What I feel is a sudden change, maybe a tad bit light headed and then the downpour. ...continue reading "CRSD and Extreme Sweating * Strong today. Strong tomorrow."

My therapist called around 7:30 pm yesterday evening. We talked for just a moment. I thought I would be able to fall back to sleep but I stayed awake until 3 am which meant I was hungry. I didn't expect to keep anything down but I did.

Flashback. I had a flash in my head just now of being beaten with the dowel rod as a teen. This would have been somewhere between the 9th and 10th grade. I was lying flat on my stomach protecting my face and hands. Sometimes when she beat me like that and the pain got to mind breaking point, I'd ask for a break. I'd tell her I couldn't take anymore and would roll facing up. She'd stop hitting and stand there with the dowel rod. I'm not good with time but I think I got less than 5 min before she needed to start again. She'd say, "Come on." and motion for me to turn back over. I did.

In my present physical health situation, I do not get to 'roll over' and say I need a break. But when I get a reprieve my goal is to take advantage of every opportunity to supercharge.

...continue reading "Physical transition and strong flashback of abuse"

I'm still awake, no sleep. It was another very, very long night of pain. I keep looking at that sentence trying to understand how I got through that. I would compare it to giving birth without any assistance, on your bed. My mind goes everywhere. I mean it runs all over the place trying to hide...trying to make sense of what's happening because honestly, it's almost unreal. It's like I can't believe my body is acting like I'm on some alien horror show where it's coming out of the hosts body.

I did just about everything I could to not think about this but it caught up with me. I panicked inside. I called my therapist. I played 50 levels of my favorite match three game and I cried for about 3 minutes. I feel humiliated...and I'm hungry. I would like a biscuit. I'd like to get my hair washed. I'd like clean clothes....meatloaf sounds nice.

The pain is in the area where she messed up my spinal block.

There will be someone here soon to help with clean up.

My eyes are all swollen and my vision is fuzzy. I just want to ball up in bed and sleep.

It felt like I had seconds before going from a level 8 to level 10 pain. Every move was calculated. Pull out liners, rest, grab heating pads from under the bed, rest, have water in sight, rest. I had to stop because every time I moved I spasmed from under the breast to my knees. I tried to work out the knots I could feel in my stomach and legs. I checked the electric cords, rest.

My eye sight goes so quickly at that time. Everything becomes fuzzy. I can feel the anger rise but I don't have time for it. I only have seconds between helping myself through hell or suffering without any comfort at all.  ...continue reading "Getting to here and now"

This is the only thing I have to explain where I was today and where my mind still is. I wrote this a few years back but my body is determined to live up to every line.


There’s a thunderstorm in my body. It’s not a hurricane or a tsunami that wipes everything out leaving people stunned and shocked at the devastation. Responders rush in to help clean up, help house and keep warm those who have survived. No, this is a thunderstorm, the type that rages until it’s almost normal.

I’m used to being wet.

Soaked. I'm soaked to the heart, to my lungs and my knees.
The rumblings make my teeth chatter. My body swings to the tune.

There’s a thunderstorm, a lightning fire in my hands, between the blades of my shoulders, in the soles of my feet.

As anyone in the rain, I walk with urgency through the dark.
The electricity is out. There are no street lights, just headlights playing tricks
in the raindrops that arouse ghosts on shiny black pavement.
I’m cold. I’m always cold but I’m used to being wet.

I can barely feel the rain yet my shoulders are held high, my brow is deep, vision swimming.
I keep walking.
I walk with white sheets of rain coming down so fast and so hard they beat anything that ever tried to grow, right back into the earth.
What might have been blows down the street, to where I can not see.

From nowhere in this norm there is thunder that shakes the trees
and lightening that threatens to set them on fire.
I hold my ground.
On shaky legs I slosh through gravel and water which has created a gritty crunch beneath my feet.
I’m going home, I think, or maybe I’m just walking.
I don’t even know the name of the street. I can’t see anything, it’s so dark.
I can’t see, anything.

My clothes cling to me.
My hair is water logged, skin shriveled, fingers numb.
I am accustomed to the rain. I’m used to being wet.
It is the thunder, it is the lightening that shakes me to the core.
The thunder is so loud, the lightening so fast
and so close
it nearly singes the last bit of my mind
the thunder didn’t take with it.
I grit my teeth and I bear it because I know with each step I’m closer to home.
I’m going home, I think.

It’s been hours, surely there is nothing left of this storm.
Surely the lightening will tire itself
and the voice of thunder will become sore and faint. It’s been hours.

I’m used to being wet, but I am so cold.
I’m so cold.


In the words of an 80's pop star, "I see your true colors shining through..." specifically yellow on the belly and shades of gangrene where your spine should be.

I have medication. I now have about 6 months worth of refills. With that information let me move on into the details. The reason I say the GP showed his true colors is because he didn't write the scripts. An appeal to the practice owner resulted in refills of much needed medication. He was generous with refills.

Here's the thing, I feel guilty. I feel at fault. I feel horrible. I feel let down. I feel ignored. I feel like I wasn't worth his time or effort. I feel I wasn't worth him even trying to connect with. I feel I'm bad and that's what caused all this.  I feel, I feel, I feel. Well, that's enough of that. I need to give some time to reality and the reality is, he is cruel. Despite talking to him about it, despite talking to the office manager about it, he could not bring himself to treat me. He .... hurt me, as a patient, he hurt me and it matters when people hurt me.  ...continue reading "Medication Update: No Love Lost"

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