[Gus1234U]

thanks, Spondi,,, oddly, there is no pain, just leakage of fluids from inside the eye, which cause flashes of light and spots. apparently, from what i can tell, it's not a big tear, and can be lazared in the doc's office.

[spondiferous]

Gus - that's a relief! I hope you're able to get in and see them quickly. It is rather hard to believe they're both off on Fridays.

Well here it is, 1:15 am. I went to bed 4 hours ago and I've just been up this whole time. Argh this is so frustrating. My eyes are burning and I'm exhausted. Back pain is also keeping me up, as are the back spasms. So much fun.

Hope y'all have good days tomorrow.

[cakeladie]

I am here Jan been really sick and trying to wrap my head around what's going on here. We have friends and family who lost everything and it's not over yet.

I see the neurologist on Monday the pulmonary doctor on Tuesday and the rhemy on the 23rd.

Havent heard from Liz, Kiya, or Christina hope all is well with them

Hugs

[January]

Oh Gus, you poor thing! Please take it easy this weekend and let your eyes rest. You must have been doing some awfully heavy lifting! Just rest.

Cake, it is so good to hear from you! I'm so sorry about your friends losing everything. That's just awful, but I am glad they are safe and have their lives.

Cake, take care of yourself. I know you. You'll over do things.
Take care, ok?

Spondi, I hope you are gently dreaming, resting oh so peacefully.

I love you all!!!! I will write more later.

[spondiferous]

Cake, I'm so happy to hear from you. I'm sorry it's still going on though. I have been thinking of you.

Jan, I hope your day went okay yesterday, your appointment and everything. If you posted about it and missed it I apologize. My brain's running on empty these days with lack of sleep.

Well I finally made it to bed around 2:45 and woke up at 7:30. The good news is that by the time I actually got there, I fell asleep straight away and didn't wake up at all until 7:30. So I got some solid sleep. I still feel like a bit of a trainwreck today - everything's too loud, too bright, etc - but I will be the first to acknowledge that it could really be much worse.

Wishing everyone ease and light and comfort today.

[Gus1234U]

(bird song and running water sound track - with video)

(i meant to say torn retina, not ligament O.o, a much smaller problem)

[spondiferous]

Mmm I love those videos. I have one I listen to a lot that never gets old. It's a campfire on a canoe trip in Ontario, near a lake. It's all the night sounds: the waves of the lake lapping, the crackle of the campfire, the night sounds of insects and stuff, and loon calls. Beautiful and haunting.

The video isn't video footage of when and where it was taped but the sound is amazing.

[January]

Hello Everyone!

Well, I wrote my last post at about 5:30 this morning and managed to get a little more sleep this morning. Insomnia is not a pretty thing.

My Dr's appt. went pretty well. I really like her. She's actually a nurse practitioner, but she knows as much, if not more, than the Drs. She wants me to tell the specialist at WVU that I need a biopsy of the growth in my esophagus. I agree with her. I have worked out some questions that I'm going to write down and take with me to ask them. My Dr. told me that if the specialist refuses, she'll find someone down here that will do it. I've had brushes with cancer in the past. I believe in being very careful and leaving nothing to chance.

My friend that is going to drive me to WVU really hurt my feelings last night. She said that I get nervous and don't communicate well at all at times. She is very blunt and I don't like that.

I am looking forward to the drive to and from WVU and am hoping for pretty weather. It is one of the most scenic drives in WV. The leaves should be at about peak color and I'll get to see it all. I'm really excited about it.

Have any of you researched or considered that you might have Chronic Fatigue Syndrome?

I hope each of you are having a good day. I love you all.

[spondiferous]

Hey Jan - sorry about your friend. She sounds like my sister, who ironically I've already done battle with once today. For the most part things are okay but she doesn't know when to back down and she takes things personally that are completely unpersonal. Plus we have a complicated past which doesn't help. I hope you have a good trip today. I'm glad you got the extra sleep. Insomnia is really torturous sometimes.

I definitely suspect I have chronic fatigue. I'm tired no matter what happens. And not just a sleepy tired, but a full-body weighted-down fatigue that feels like I'm constantly walking in molasses up to my chest, against the current. And that's on a good day. The thing is I don't know if it's because of something like fibro, because sleep issues and fatigue are two of the possible symptoms, or if it's in a class of its own. I plan to explore this more because there is nothing in any of my tests that I do that ever comes back to suggest it's something else. I also have hypothyroidism but that's been stable for a while. And I have sleep apnea and have been using a CPAP for a few years now. Having to wear that ridiculous mask certainly doesn't help anything.

[Wild Coyote]

Had a very busy day yesterday and was exhausted. It was methotrexate night and I was awake with nausea (despite the anti-nausea drug) most of the night. I had gotten to sleep at 5 a.m. and was awakened by a call at 7 a.m.
Uggh! I was hoping to sleep more!
One of my nephews came by for breakfast. A niece came by for lunch. (I was so glad I'd pushed myself to get more groceries yesterday.) It was wonderful to see them both!

Jan, So glad your appointment went well. I hope you easily obtain the biopsy you need. When do you go to WVU?

Cake, So sorry about your friends' losses. Please stay safe.

Gus, Sorry about the torn retina. Sounds serious! I hope your eye will be fine until you see the eye doc on Monday. Thanks for the link to the sound track! Please take care!

Spondi, Sounds like insomnia is a problem lately? I am having similar sleeping issues. I am supposed to have a sleep study. I definitely have apnea; yet, really don't want to mess with a mask. (I know, I know.... lol.)
Thanks for the sound track link, too!

~Christina, Thinking of you.

Jan had mentioned CFS. Yes, I have been involved in CFS research studies for over 15 years. I was diagnosed by a CFS/M.E. researcher. in the U.S., the Institute of Medicine has renamed CFS/CFIDS/ME. It is now officially SEID, Systemic Exertional Intolerance Disorder. The CFS research has never had a real chance. Research monies were never enough, and a lot of it was misdirected and channeled elsewhere. It's never had a fair shake and is still too often, considered a joke, most unfortunately. Having been involved with researchers, I have lots to say about the whole CFS mess; yet, I'll refrain for now.

If anyone wants to see the new case definition, just google SEID or Systemic Exertional Intolerance Disorder.

I am about to take a "time out." I am exhausted. It won't be long before H is home and I will be getting dinner for us.

Much Love to All!

WC

[childofchaos831]

Hey y'all. Sorry I haven't posted much in a while. I'm still having a good deal of pain from the surgery. It does seem to be getting better, but it still hurts a lot.

I went on weds to have the incision checked, drove myself, and have to go back Monday to get the sutures removed.

Aside from that appt, I've only left the house twice. Once Monday, cuz mom needed gas and the mail and she drove that time. The other time was tues cuz I wanted to be sure I would be able to drive myself... I had a coupon to in'n'out, for a free meal (burger, fries and soda!) so I went there and also to get a slurpee cuz ever since I was little, they have made me feel better.

I'm going a little stir crazy, but it takes a lot out of me to even put on enough clothes to go outside to smoke... hmph...

[~Christina]

Hey everyone !

I am just overwhelmed thinking of writing to each of you I'm sorry know I my thoughts are with you all ....

So by Gawd I am hoping we all catch a break , seems everyone is under so much stress.... Proves how strong we all !!!!!!

My Fibro and psoriatic arthritis is on my last last fringe of a nerve. The new sulfa med isnt doing anything yet , I know that will take some time.

I have a hard time waiting...... I started a new Psych med to help me hopefully with my Rage issues and just my Bipolar rearing its ugly head. So 2 new meds in a week ..

The Doctor and Pharamist Both warned me about being in the sun even with sunblock , well Ill be damned if I didnt have a reaction. Loads of sunblock and a hat was out fishing with my husband for like and hour and my face got really red and rough feeling... Ugh its not gone away yet ... any ideas?

Im just a giant whiney pity party fool at the moment.

Please everyone stay safe and be nice to yourselves !!!!!!

[spondiferous]

Hey Christina, my sister used to have psoriasis and everything irritated it. Not sure if that's at all similar to psoriatic arthritis. Is it irritated, or just rough? (like is it a problem of texture or is it also irritated/inflamed?) My first instinct is to say something soothing like aloe but I'm not sure if you have anything like that, or if you can use it safely. In regards to your meds - I always have a problem with new meds, and two new ones in a week would be super overwhelming for me. Hopefully it's not the same for you.

Child, hope you manage some kind of relief from the stircraziness. That feeling and I are old friends, more and more these days.

Wild, I don't blame you for not using the mask. They said I would get used to it and it's just not true. The two sizes of nose piece I can wear, are either constricting, or large enough that the mask is constantly shifting and blowing air in my eyes and all over my face while I sleep. I'm constantly waking up to adjust it. Also the air hose connected to the machine constantly gets wrapped around my neck while I'm sleeping. Nothing dangerous but it's annoying. I have to wake up and untangle myself, get comfortable again. Or the velcro, which is the only kind of closure on the model of harness for my mask that they make, comes undone and I wake up with it on my forehead and it's just like . So I have no illusions that the CPAP is probably interfering with my sleeping

[Wild Coyote]

New (CFS/ME) Systemic Exertional Intolerance Disorder definition:

https://www.medscape.com/viewarticle/839532

For what it's worth.


WC

[cakeladie]

Christina put some aloe vera on it and hope for the best. It should be better hopefully by tomorrow. Also drink lots and lots of water.

For me with lupus just a few minutes in the sun will due me in. My skin will blister and for me it's not only the sun but the heat. If it's hot outside and I go out just for a few minutes I will end up on the bathroom floor throwing up. Not fun.

For most lupus people hats are a must sun screen and don't forget your ears or the back of your neck and long sleeves and long pants. There is also a laundry detergent that you can wash your clothes in that makes them UV protected. It's really good stuff.

Hope you feel better

Sending you lots of positive vibes and hugs

[~Christina]

I have scalp psoriasis that’s controlled by a med call Otezla.

The psoriatic arthritis is a new deal, my rheumatologist said I do have severe fibromyalgia but also the psoriatic arthritis, which now has me hopefully that just maybe my pain level of a 7 that I am use to will drop even just a tiny bit.

Cake I don’t know how you manage everything thing you do . Please take car if you.

[~Christina]

Originally Posted by spondiferous

Hey Christina, my sister used to have psoriasis and everything irritated it. Not sure if that's at all similar to psoriatic arthritis. Is it irritated, or just rough? (like is it a problem of texture or is it also irritated/inflamed?) My first instinct is to say something soothing like aloe but I'm not sure if you have anything like that, or if you can use it safely. In regards to your meds - I always have a problem with new meds, and two new ones in a week would be super overwhelming for me. Hopefully it's not the same for you.

Child, hope you manage some kind of relief from the stircraziness. That feeling and I are old friends, more and more these days.

Wild, I don't blame you for not using the mask. They said I would get used to it and it's just not true. The two sizes of nose piece I can wear, are either constricting, or large enough that the mask is constantly shifting and blowing air in my eyes and all over my face while I sleep. I'm constantly waking up to adjust it. Also the air hose connected to the machine constantly gets wrapped around my neck while I'm sleeping. Nothing dangerous but it's annoying. I have to wake up and untangle myself, get comfortable again. Or the velcro, which is the only kind of closure on the model of harness for my mask that they make, comes undone and I wake up with it on my forehead and it's just like . So I have no illusions that the CPAP is probably interfering with my sleeping

Yes my skin is all rough texture. My skin on my face has just gotten so dark lines and it’s making me crazy.

I’m not a diva by any means but my skin use to be pretty okay , now I feel if I go out I need to at least throw some foundation on it,

Just seems like everything has gone to shyt since we came her to Florida for a year. Ugh ugh ugh

Sorry for the fest

[spondiferous]

My sister lived in absolute torment with hers. From the time she had it until the time she passed away (from unrelated causes) there was virtually no relief and she was so self-conscious about it. It was so sad. It came out of nowhere in her 20s. And then suddenly she had it everywhere. So I can certainly sympathize.

I don't have that problem but all kinds of skin problems, some stress-related, some complete mysteries, some allergy-related, run in my family. I have several myself. It's such a pain.

[Wild Coyote]

Child, I'm sorry things are still difficult. What is the expected timeline for a full recovery from surgery?

Cake, I am so sorry you suffer from Lupus. Lupus can be so very devastating. Please take care.

~Christina and Spondi, I deal with some skin psoriasis (and eczema). I can get by with various prescription creams and methotrexate also clears the worst of the skin issues, in my case.

The psoriatic arthritis is extremely painful. I have it throughout my body; however, my feet and ankles are the most painful. I am awake now because my feet and ankles feel like they've been crushed with repeated blows from a sledge hammer. Eventually, the methotrexate should overcome the process and the pain (It has before). If it fails, I have to move to biologics.

May we all experience Peace, Comfort and Joy!

WC

[spondiferous]

Wild - that sounds awful. I'm sorry you have to experience that.

I managed to sleep until 4:30! Woohoo! Last night I was talking to a friend of mine (who I will be seeing today) and he wants to start going to the pool to do exercise again so we agreed to be exercise buddies! I'm so excited because I'm pretty sure water exercise is about the only kind I'd be able to handle right now, as weight-bearing has been more or less out of the question for a few years now. But I just really miss being active. It makes me sad to sit around day in and day out doing really nothing at all, changing positions every few minutes because of the pain, unable to participate in social activities or anything else. It's hard not to get stuck in the feeling that it's never going to change. But I hope this works out because it would be a really good thing, not just physically but mentally, emotionally, and spiritually.

It's still dark here. The sun isn't yet beginning to lighten. My living room window looks out on a ravine and it's beautiful so I'm thankful for that. I hope you all have a restful day, or whatever you need it to be.

[childofchaos831]

Originally Posted by Wild Coyote

Child, I'm sorry things are still difficult. What is the expected timeline for a full recovery from surgery?

I'm not sure. I go to get the sutures removed Monday, but that's a walk in appt. I think I'll either make an appt while I'm there or try to talk to his MA. The pain is better than day 1, by a lot, but it is also still limiting what I do and where I go.

I'm gonna try leaving the house today. Gonna go to church with mom and then lunch after with mom and a friend of hers. She will be driving. I'll try to remember to let y'all know how it goes.

[spondiferous]

Child - good luck with your outing today.

[Wild Coyote]

I'd finally gotten enough relief by 5:30 am so I could sleep 4 hours, for which I am thankful. Just relaxing and reading posts here for a few minutes.

Child, Thanks for your response. I hope you have an enjoyable day with your mother.

Spondi- I find it helpful to have a friend with similar goals/interests. Friends like this can help with motivation. I hope you have fun with your friend today!

If I perk up some more, I might get to see more foliage today. Time will tell.
I hope everyone has an enjoyable day!

Love all around!

WC

[Gus1234U]

wow, 2 pages of posts~! my internet went down last night, so i got 11 hrs of sleep LOLOL ,,, i'm sure there's a lesson in there somewhere ~

[lizardlady]

Gus, three pages of posts since I last visited the thread! Folks, I tried reading everything, but just can't focus to take it all in. It seems many are having problems. I wish there was a magic wand that would take away all this , er, poop!

Work has been insane the last couple of weeks. It was like every day was Monday. Most nights I've been too tired to even boot up the computer. Those nights that I did I didn't post here because I'm tired of hearing myself whinge about the same old same old - I hurt and I'm exhausted.

Cake, please be safe. So many have lost so much to the fires.