[Kiya]

Liz, Gus- yes both of your descriptions sound like what I go through.
In fact I had describe the feeling as electrical poles in a Highwind that are sparking and snapping and about to break.
Liz, come to think of it, I think I was told I also knocked over my high chair and hit the back of my head which would mean seven head traumas. But at least I am consistent there's two in each place and then the one on the top
That is interesting to hear that DID can look like that on an EEG. Maybe that is why he wants me sleep deprived in the hopes that I will nap during it.
I to get that crawling sensation from either one side to the other or sometimes both sides to the front. But it has been going on so long and I haven't paid any attention until lately when I couldn't make sense out of every day things.
The EEG still is not scheduled yet, but I will keep everyone updated.
Yeah standard treatment in the 80s was an ice pack and a Tylenol. Sit and be observed and stay still. I never went to the hospital either for those.

((((Liz, Gus, Jan))))))

[Kiya]

Originally Posted by lizardlady

Just a heads up - I might not be around much this week. I'm on vacation!!!!!!! Am going to be away from computer access for the last half of the week. So, no worries if I'm not here.

Yay you!!! Enjoy!!!! 🎉😊💖

[Gus1234U]

[January]

My favorites, Gus! Thank you so very much!!!!

[lizardlady]

Kiya, it's been decades since they did the EEG I remember, but they gave me a mild sedative to help me go to sleep. The funny part of that was that my mom and I had to ride the bus from the city back to the suburb where we lived after I had the test done. The bus was crowded and we had to sit across the aisle from each other. I kept dozing off and starting to fall out of the seat. Mom had to keep putting her hand out so I didn't fall in the aisle. Looking back, I wonder why someone didn't offer us seats together.

[lizardlady]

Gus, you find the prettiest pics. Thanks!

[lizardlady]

Vacation plans have changed. I was going to spend the end of this week with a friend who lives out of town. She had to put her cat down Monday and wants to be by herself for a few days. I'm disappointed, but understand. She and I are alike in that we kind of draw into ourselves when grieving. She needs a few days by herself.

Not sure what I'm going to do the rest of the week. I worked like a demon in the yard at my mom's house the last couple of days. Not going to do much of anything today. Gonna spend the day vegging. Hey, that's the best part of vacation, right? Not having to do anything.

[January]

Liz, I hope you have a wonderful time off.
Just try to do nothing. It will be wonderful!

[Kiya]

Originally Posted by lizardlady

Kiya, it's been decades since they did the EEG I remember, but they gave me a mild sedative to help me go to sleep. The funny part of that was that my mom and I had to ride the bus from the city back to the suburb where we lived after I had the test done. The bus was crowded and we had to sit across the aisle from each other. I kept dozing off and starting to fall out of the seat. Mom had to keep putting her hand out so I didn't fall in the aisle. Looking back, I wonder why someone didn't offer us seats together.

:O woah!! Yeah that would have been the decent thing. I've not been told I would be given a sedative. But then, they still haven't called to schedule.
I wrote the neuro to ask about concussions as well as my pupils being different sizes in low light (my t noticed Monday and stared at my eyes for a while, unnerving me). He only answered that he'd measured them 2 years ago (I don't remember this) and that that happens in some people. Said nothing about the concussions :/ since he's leaving July 17th, I think I'd rather he'd just have transferred me over to someone new already.

Sorry your vacation plans were changed- but I hope you get to enjoy doing nothing down time is good. Sorry about your friend's cat
Hugs!!

[Kiya]

Fibro flare 😭😔😕😞 worst I've had in a while. Can hardly move my back and not sure I can keep down the coffee and Tylenol I took 2 hours ago. Didn't get a wink of sleep; fave up at 5:30am. Still going to go to chair yoga (which I think started the flare two days ago) to try and work thru it; let my body know 'this IS what we're doing, end of story.'
Then I can nap. I was going to try and get to a mental health support place today (build that resource when I'm doing ok), but I think that got changed.
Hurting soooo bad. I don't think I could even get in the tub and I have no hot packs. Part is my fault- a drank a Mike's Harder Lemonade- poison!!! I wanted to try that flavor, even tho I knew it would make me sick. I just didn't know (remember?) it would make me *this* sick. Sooooooo not worth it.
May health be with you all ❤️

[Gus1234U]

{{{{ Kiya~! }}}}
i have 3 heating pads, they are my doctors....

[Gus1234U]

and a VERY happy birthday to you, Mz Liz~!

[lizardlady]

Thanks Gus! What an adorable cake!

[lizardlady]

I've got some nice cheddar cheese to go with this whine.

I feeling like a not very good friend today. Actually, I have a mild case of "life sucks" today. I posted about my friend's kitty having to be put down Monday. I'm trying to be a supportive friend, but am feeling drained dry. I was supposed to go to my friend's for a few days the end of the week. We were going to dinner for my birthday and just going to hang out. She cancelled because she is so down about putting Ciara down. I understand that and am cool with it. Still, I turned down an invite from another friend because of the now cancelled plans. So instead of doing something for my birthday I'm here hanging out around the house.

BTW, a huge thank you to everyone here for the well wishes. I can't express how it makes me feel.

The thing is, this friend has a history of cancelling plans. It gets old. I understand she wants to be alone while she grieves. I prefer to grieve by myself too. BUT she's calling me 3 or 4 or more times a day about what's going on. While Ciara was alive it was to talk about Ciara's health. Then since she put her down she's calling for support. I'm drained. I don't have anymore to give. I know I'm not a bad person for it, but I feel rotten about wishing she'd stop calling me or at least cut back on frequency and duration (each call lasts at least an hour)

I'm dealing with my own grief stuff this week. I mentioned before that Ciara's death opened up old wounds for me. I miss my mom. I miss my husband. I miss the army of fur babies I've lost.

On top of all this I didn't sleep worth shyte last night and am exhausted.
GERD woke me up at midnight thirty for a trip to the bathroom to upchuck what felt like everything I ate for the last six weeks. Then I couldn't get back to sleep, brain was going a million miles an hour. Gave up. Got up and watched a couple of hours of TV and fell asleep on the sofa. Woke up a couple of hours later to upchuck again. Crawled into bed and got a few more hours sleep, but feel like the walking dead.

Okay, enough whinging....

[cakeladie]

First off Liz Happy Birhtday. You deserve to be treated like a queen specially on your birthday

Second I am sorry I haven't been around much. I haven't been feeling well plus we had a major heat wave which does not do anyone with lupus any good. Then just plan pain. On top of that hubby wanted to go to Yosemite and he invited his brother who usually has to have things done his way.

We haven't been camping in 5 years. When we go to Yosemite we stay at the lodge. So he got it in his head that we are camping. Hmmm great and boy when he had to get stuff down for camping the curse words were flying. Half way there we got a phone call saying so sorry you don't have a site because there has been flooding. We had 9 days of record heat at one point San Francisco got in the 80-90 range. Anyway I went in there and we got a spot. But every part of my body hurts.

Then the law changed has of July 1st regarding pain meds. Then my rhemy changed my appointment twice and the nurse said well you don't get your medicine if you don't come now. I was like what

So Liz I was up with you last night. And try and get some rest during the day isn't happening. I am tired and cranky.

I hope everyone is doing ok. Sorry I haven't been around.

Sending positive vibes and hugs to everyone

[cakeladie]

Hey guys this is just a heads up. Has of July 1, 2017 the rules will be changing in regards to getting pain meds. I was allowed up to 6 pain meds a day. I don't always use 6 a day but when the pain gets really bad I had them. Also with me when my pain level goes up so does my blood pressure.

My rhemy was supposed to give me 5 pain meds a day this month then go down to 4 next month but she made a mistake and took me right to 4 pain meds a day. She did however give me rescue pain meds which is a different pain med then I usually take. She can give me up to 10 a month.

It's really sad that when you need meds you can't get them. Do I want to be on pain meds no but do I need them yes.

If I have already posted this information please forgive me. I am having a rough time lately

[cakeladie]

Kiya my neurologist had done the EEG in his office several times. But I also had a 5 day EEG done at Stanford. It was the worst experience ever. It took them hours and hours to hook me up and I had to keep that stuff in my hair for 5 days. I only lasted 3 days. Then it took me days to wash the c r a p out of my hair. My friend had one and she was in hospital for 2 days. The last day she had to stay up 24 hours straight.

Good luck and keep us posted.

[childofchaos831]

Going for an MRI on my lumbar tomorrow... a little scared... last esi didn't help at all, and the doc said he wanted an MRI to check if new damage... hoping I can go in feet first.

[~Christina]

Im headed from Florida back to our place in Tennessee tomorrow night so we can finsh laying the flooring and get the house ready to sell.

I wont have internet or tv so Ill be gone for a few weeks .

Everyone be kind to yourself !!!!

[Kiya]

Oooooh Liz (((((hugs!!!)))))) boundary setting time and a crapy time to have to do it
That said, Happy birthday 🎂🎉 I do wish you were doing something fun.
xoxox

[Kiya]

Originally Posted by ~Christina

Im headed from Florida back to our place in Tennessee tomorrow night so we can finsh laying the flooring and get the house ready to sell.

I wont have internet or tv so Ill be gone for a few weeks .

Everyone be kind to yourself !!!!

Take care! Thanks for letting us know!

[Kiya]

Originally Posted by childofchaos831

Going for an MRI on my lumbar tomorrow... a little scared... last esi didn't help at all, and the doc said he wanted an MRI to check if new damage... hoping I can go in feet first.

Luck!! I'll be a pocket rider if you want!

[childofchaos831]

Originally Posted by Kiya

Luck!! I'll be a pocket rider if you want!

I might need it. Claustrophobia kicked my butt last time...

[Kiya]

Cake- oh man, I can't even imagine several days of an EEG!!!
They still haven't called to schedule. The neuro showed his colors again when I pinned the concussion question down: "yes they can cause epilepsy. Let's not have communication again until after the EEG results are in". Rrrrrow! Like that d amn email took him more that 30 seconds to write.
At the rate this is moving, I'll be under a different specialist- he's changing focuses as of the 17th and leaving. Grrr.
Meanwhile, I didn't sleep a wink either, even worse flare, and another med change.
"Lab rat r us".
Hugs all!
🍷🧀

[cakeladie]

Christina good luck e will miss you

Kiya I know how frustrating they can be. Some doctors now have an almost God complex