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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."

i sketch without heart. not much of anything is getting done because my pain level has risen.

my therapist double booked for friday which means i won't go in. he called at 5:33 pm wed, 30 min after hours to say he doubled book friday. he doesn't work thursday's at all. he said to call the office thursday to see if i can reschedule that appointment for a later time on friday. i told him up front that i am not able to reschedule those appointments bc the person taking me has a very full schedule. 5 min of a call from him out of the blue, after hours, where i can't talk to him again until friday evening isn't good. i'm not pleased. i'm going to have to get ok with it in my head. it was a mistake. i can live with it. my body isn't allowing me to sit long anyway. i'll fix it in my head so that it doesn't feel like more than it is, a mistake.

i'm having a hard time sitting. i can stand or lay flat but sitting is painful. spasming has been a problem again. i just want to cry.

i was going to say that i don't care about stuff right now and that i don't want to do anything but not caring doesn't totally fit. i'm angry about a few things. i think most of it has to do with pain levels rising and not being able to sit longer than 10 min without spasms. i've come back to this entry 3 times now to finish it.

i'm raw at the moment bc i'm getting closer to the date to see my new general practitioner. this month seems extra full of appointments, stuff i can't get out of. i'm going to the very last dental appointment which i'm not looking forward to.

i'm raw after finding out that its my brother my sister feels guilty about. i can't believe i actually thought she could/would feel anything for me other than contempt. i wonder why i allowed myself to believe she's capable of feeling anything for me? why did i again put myself in front of a speeding bus then ask why it ran me over. is she always going to be a dangling carrot? the type of temptation i just can't resist? i feel so stupid. what was i thinking?

yesterday someone wanted to adopt all three of my fire belly frogs. they are now with a larger pod in a much larger terrarium. this means my only frog is Pete the African Clawed Frog. i don't want any more fire bellies. they're adorable but they aren't for me. i want a land frog not semi aquatic. the good thing is that i've got the correct set up for frogs here. i never sell of major equipment i know i can't replace. tanks are easy to replace but other equipment may not be. ah... snails. i thought all 5 of my little baby snails died but it appears i have one little guy. he's adorable. i tried to out source getting a snail but it hasn't worked. now i have to out source even further and bug my friend one state over about putting a snail in the mail. i just don't know enough people willing to dig in their yard for stuff. wow, the things a girl does for pets. anyway, as long as i have a few live things to fuss over and care for then i'm good to go.

oh yeah, my web mistress is working on the rss feed and the issue with commenting from the wordpress reader.

Let the River Wash Over Me - SOLD - Redbubble prints available Snow and her husband were here today but I wasn't able to get up and greet them. They did what they came to do and left. I've been here in bed most of the day. I checked the news and got on FB for a minute. My body is screaming, even my scalp hurts. The weather is changing and that's a problem.

I'm not depressed right now just in, 'here we go again' mode. Some call it self pity and that's fine. I was in bed thinking, the rest of the world is living but I'm hugging the wall in bed with a voice inside saying,, 'help me.'

It occurred to me that I should contact the doctor that diagnosed the CRSD to see if he can assist in any way. ...continue reading "Low stimulation, high emotion, high pain level"

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"

After a bit we decided to run to the store for some yogurt and cheerios. While there my pain level rose. I tried so hard not to panic. I did deep breathing but I panicked. I was sitting in the wheelchair with my head in my hands crying hard but silently. My friend says she's never known anyone to cry hard and not make a sound. I just do. Exhaustion plays a part in my inability to handle round two with any type of ........anything. I just bent over and public.

I've shopped at that store for ten years, they know me.

Again, I had seconds before I rose from a level 8 to a full blown ten. I pulled the chair over and let it pass. Forget the public, forget embarrassment, forget it. My body is going to do what it's going to do and I'm going to come out on the other side stunned like I've never experienced this before, like hey, where did that come from, that's not normal. I'm always stunned.

I brought home almond butter. I have beet root because I need to detox badly. I hardly ever do the beet root detox. Why am I still talking? I'm so tired i can't even see straight. Here I am fighting sleep....again. I just don't want to lay down.

I purchased heavy whipping cream so I can add it to fruit smoothies.

I give. I'm going to sleep.

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