[Gus1234U]

WB Kiya~! (i hope you're glad to have lived thru all that~ O.O )

and thank you Everyone~! for including me in this lovely little circle of friends.

[spondiferous]

Hey all. Just checking in briefly. I'm about to go for a rest but I will read back in further detail when I get the chance.

I have not been diagnosed with fibro but I will be surprised if it turns out to be something else (I see the doc a week from Thursday). I am tired of being in constant pain, everywhere in my body, and being too exhausted to do anything about it or take care of myself properly, and to have nobody in my life who understands the degree to which this affects my life. I had to leave work for mental health issues a number of years ago, which was devastating, and just last week I finally had to leave university because I could no longer attend due to pain issues, and I was on scholarship for my grades. I feel like I'm losing everything, like I've just steadily been losing everything for years.

My thoughts go out to those affected by the storms, and everything else I don't know about yet.

[Gus1234U]

so good to see you again, Spondi~! i hope you not only get a Dx, but some relief~

[January]

Spondi, I'm so glad you joined us! I, too, hope you get your dx and the Dr. helps you. Pain is a great equalizer.... You are among friends and don't ever hesitate to post about what's happening with you.

Kiya, I'm so relieved to hear from you, but I'm horrified at all that's been happening to you! Please, please slow down if you can.

Cake, I am seriously considering going of my methotrexate. The Dr. said the normal dose wasn't working and increased it,
but I see no difference at all. Thank you for the warning. I know you care very much.

I love you all.

[childofchaos831]

I've got the follow up to check the incision tomorrow. I also have a therapy appt scheduled after it... I'm gonna try a kind of test run today. I have a coupon to in and out, so I'm gonna try going by myself today, and see how much pain I'm in. If It's too much, I'll cancel my T appt and have my mom drive me to the surgery follow up.

The pain has varied. Some days I'm ok and some it's awful. Sunday was great, and then yesterday I wanted to cry again. So we'll see...

[cakeladie]

I really can't wait for this year to be over with. Northern California is on fire whole neighborhoods wiped out. Smoke is thick so I can't leave the house.

Jan stop taking that medicine it will do more harm then good

Hope everyone is hanging in there

Hugs

[January]

Child, I hope the pain all eases and you feel well all the time.

Cake, please be careful in all that smoke! Don't go outside at all if you can possibly manage it.

I have to stop the methrotrexate for a while anyway because I have to have a biopsy or biopsies on my face. The rhuemy told me that methotrexate makes places very difficult to heal, so I'll use this time to see if it was helping at all.

What are biologics? Does anyone here take one? Would a biologic be a viable option instead of methotrexate?

[spondiferous]

Jan, I hope your biopsy(ies) go okay. I have never heard of biologics but I just looked them up. They sound interesting, if they work. Right now I'm considering CBD oil, it's been recommended to me by a few people and I'm going to talk to my doctor about it. My sister says it helps alleviate all kinds of things for her, without any kind of mind-altering experience or chemical hangover. Upon doing some basic research (my wife has been doing research too, bless her heart) it appears that it has the potential to address many of my concerns, from pain to sleep to skin inflammatory conditions to OCD, anxiety and depression. It's hard to hope that anything could help, I've had such crappy luck with everything I've tried. But I'm too sensitive to take painkillers and because of my history of addiction I'd rather avoid them anyway. I was also thinking it would be nice if I could find someone who drives and could pick me up a few times a week and take me to a pool so I could do water aerobics. That way I could get exercise without having to bear my weight, which is next to impossible anymore. The ironic thing is I live perhaps 2 blocks away from the rec centre on campus, which has a pool and water aerobics classes, but it's up a series of hills and they're just impossible for me right now. And the nearest bus stop is almost as far away as the rec centre.

Child - I hope you are able to get done what you need to do to take care of yourself, and that the pain eases for you. It can be so frustrating.

Cake, sorry to hear about the fires. I live in BC (Canada) and every year a quarter of the province burns, I swear. The fires were nowhere near us this year but because of how many there were we were clouded in smoke most of the summer. It was awful. I've lived right in the middle of them before, with the roads cut off in all directions for safety reasons, no electricity, no toilets, no showers, no telephone, no stores open, no way to keep food. It's scary. I'll be thinking of you. Hopefully you are able to avoid the worst of it, whatever that looks like for you.

Gus and Jan - thanks for your greetings. I have missed you both. I am hoping to learn some stuff about what I am experiencing. It feels weird because I've been experiencing most of this for decades but never thought to get it checked out as a possible condition (fibro) but I've tried diagnosing lots of the separate components and all the tests keep coming back negative when I know there's something wrong and it all impacts my life dramatically. It would just be a relief to know I'm not imagining it all.

[Gus1234U]

i know someone who practically lives on CBT oil... or he couldn't have a life at all for the pain.... best wishes, all~!

[Wild Coyote]

A warm hello on a chilly day!

I've been very weary and in a lot of pain. It's also been very busy. We had company stay for the weekend. I enjoy company, yet I tire easily. I have been getting behind on keeping up with posts.

I'll try:

Gus, thanks for the beautiful pictures!

Spondi, welcome back! I hope you find you have a treatable diagnosis. Best wishes with the CBD oil trials. Please keep us posted.

Cake, I hope you are out of the smoke ASAP. Please do stay protected as the lung infiltrates from smoke stay in the lungs for years. (Once did an educational seminar for my community re: outdoor fires, burning yard waste and the lung infiltrates caused by doing so. Very harmful to the lungs on a long-term basis.) Take excellent care!

Jan, Sorry you need biopsies. What a good time to discern if MTX is helpful or not. It's truly important to know. I find MTX very helpful. I am told whether or not a person is helped or harmed (or both helped and harmed) is a very individual matter. I know of many people having used MTX for many years and they are fine. My heart goes out to anyone harmed, of course, and it does happen.
Biologics? These are drugs like Humira, Enbrel, etc. My rheumy tells me the risks are higher with biologics. The biologic(s) available for use depends upon the diagnosis and the studies completed showing biological efficacy for that diagnosis. There isn't a standard biologic to replace MTX per se, it's contingent upon the diagnosis.

Everyone is different. We must allow for those differences.

Child, I hope your healing is going well! You are highly motivated to do a trial transportation run! I hope you get to see your therapist and get to your surgical follow-up. I hope you are more comfortable with each passing day.
Please keep us posted.

~Christina, Thinking of you, offering comforting vibes daily.

I hope I've included everyone. If not, please forgive me.

Much Love to All!

WC

[~Christina]

I am on the last option for my psoriatic arthritis A Sulfa med ... Im on day 8 so nothing yet IF it doesnt work we will have to consider Biologics. I am very worried about it.

But ....... Since my pain is not all Fibro I am desperate for any kind of help , He said I still have Fibro and said he cant imagine the pain I suffer daily.
I dunno what to do I have to see how this med goes.

I hope all of are kind to yourselves

[Wild Coyote]

Originally Posted by ~Christina

I am on the last option for my psoriatic arthritis A Sulfa med ... Im on day 8 so nothing yet IF it doesnt work we will have to consider Biologics. I am very worried about it.

But ....... Since my pain is not all Fibro I am desperate for any kind of help , He said I still have Fibro and said he cant imagine the pain I suffer daily.
I dunno what to do I have to see how this med goes.

I hope all of are kind to yourselves

I go through similar with FMS and Psoriatic Arthritis. I am on my second trial of methotrexate (MTX). It helps me some. If not this, I've tried everything except biologics too. Its disconcerting, I agree.

[spondiferous]

Morning all. I have an appointment at the hearing clinic this morning. This is my first time out in public in weeks. I'm nervous about all the stimulation but I really want to get this appointment over with because I've postponed it twice now, for different reasons. My wife is coming with me and we'll be taking a taxi because of her injury, so that's helpful. I just want it to be over so I can come back home.

I made a list yesterday of all the symptoms I experience with my as-yet-unnamed condition. It's quite lengthy. But it feels good to have it down because finally when I go in there I can discuss it with her and not have to worry about forgetting anything, minimizing anything, etc. Yesterday was a good day but I'm exhausted today. I barely slept last night after midnight. So I suspect today will be a slow one. Wishing you all an obstacle-free day, whatever that looks like for you.

[January]

Christina, sulfa takes a while to get into your system and start working. Give it some time.

Gus, the flowers are beautiful!

CW, I hope the methotrexate helps you and doesn't cause any bad side effects. My Drs do blood tests on me every time they see me. They always do liver and kidney panels.

Spondi, I hope your appointment goes great today. It's so good to write your symptoms and problems down so you can use it when you talk to the Dr. I always do that. If I don't I always forget something important. I hope your day goes great and that you come home and get some sleep.

Cake, I watched part of the national news just for you last night. It was about the fires. Are you close to them? Are you safe? Be careful, dear heart. I am worried about you.

I go back to the dentist today to see if they can do anything to fix my lower denture so I can wear it. I am losing hope for it. Also, there is almost a hole worn in the top one already. That can't be right. I've discovered in my research that people with Sjogrens have a lot of trouble wearing dentures. Who in the world would have known that before I started this journey?

[Gus1234U]

sounds like today is a hard one for all of us~! yesterday i rode the little bus for the first time since June (my cousin had been here for the summer), and today i am dosing myself strongly. aw well, i was clever enough to put a roast in the oven before i went shopping, so i had a good dinner with no fuss.

the little critters are putting on weight fast, and the tiniest ones have followed the fatter ones to my house. i'm feeding them a substantial part of my budget, but my heart breaks to know they will starve to death this winter. there are no berries and people are bear-crazy, locking up their trash.

May every being have safety and the causes of safety~!





some of them have almost doubled in size in the 7 weeks i've been feeding them~!

[Wild Coyote]

Jan, sorry you have been experiencing issues with your dentures. Bummer! I hope the dentist can help. I enjoy your sharing about Sjogrens; it's helpful to understand more about it. Yet, I am sorry you have cause to know.
It's clear you have a sweet, gentle, truly compassionate spirit. The world needs more people like you!

Cake, The fires are just horrible! I hope you are safe!

Spondi, I hope your appointment today is helpful. Waiting to hear how it went for you and your wife.

Child, Thinking of you, hoping the healing is going well. I hope you are comfortable.

~Christina, I hope your needs are being met. Much Love to you!

Gus, Thanks for sharing beauty with us! Awesome! I am sorry you are suffering today. I can also feel you compassion for all. Also awesome!

Liz and Kiya, I know you are often participating here. I hope all is well for each of you.

Oh, Jan, thanks for the well wishes. I get labs done every month now. Initially, I'd had labs every two weeks. I have a standing order there, so I can go in anytime.

The weather is changing and pain/stiffness are acting up. I am also on prednisone daily and morphine (for the past 15 years). I am hoping the MTX will work well enough that I can finally decrease the prednisone and the morphine. I am not in full swing with the MTX, as I have been increasing slowly and my joints are in a lot of pain today. I'll have another injection soon.

It's a beautiful day! If I can get the pain to quiet enough, DH and I are going to take a ride through another part of the mountains, in order to view the foliage. I hope I can make it today. If not, then another day soon.

Love All Around!

WC

[spondiferous]

Christina - good luck with your meds. I know it can be so frustrating. I hope you can find something that works for you. I will be thinking about you.

Gus, I love your critters! So sweet! And I get it. We're surrounded by animals here - bunnies, deer, raccoons, squirrels, all kinds of birds - and I worry about their wellbeing all the time.

Jan, I'm sorry to hear your dental stuff is still such a problem. I know this has been going on for a long time for you. I hope they can help you figure out what to do in a way that works for you.

WC - good luck with the MTX. It sounds like you live somewhere beautiful, though that could just be my bias since I've spent most of my life within easy reach of mountains and I know how wonderful they are. Hopefully you get to go out today and experience them firsthand.

Hope everyone else is doing okay today. Cake, I hope you're managing to stay safe from the fires, and not too heavily affected by the smoke and whatnot.

The appointment was good. Originally I just went because I needed forms for my university, to register with the disability resources centre. Even though i'm withdrawn I'm still going to file them. Picking them up is one of the things I did today. So I did the hearing test and he gave me a new pair of hearing aids to trial and they're not perfect but they're a heck of a lot better than the ones I already have. I wasn't expecting that at all. To be honest I've had so many things wrong for so long that I've given up hope that anything can help, and I'd kind of fallen in a rut. But anyway, I was going to get the aids, but the ministry of social assistance (the regulators of disability assistance in my province) doesn't cover any aids above $4000 (for the pair), and only every 3 years. So I was going to have to pay $5300 out of my own pocket and I was going to do it but then I withdrew from school and didn't think I'd have the money. Well it turns out that they're going to cover $4000 of it so I'll only have to pay the difference, AND I can get a yearlong payment plan! No interest or anything. So I'm getting new hearing aids next Friday! So excited.

Anyway, I came home and got a bunch of stuff done (not sure where I got the energy...) but now I'm exhausted and taking a break. I'm determined to get a load of dishes going before I settle down for my nap.

Wishing you all ease and light.

[Wild Coyote]

Originally Posted by Gus1234U

sounds like today is a hard one for all of us~! yesterday i rode the little bus for the first time since June (my cousin had been here for the summer), and today i am dosing myself strongly. aw well, i was clever enough to put a roast in the oven before i went shopping, so i had a good dinner with no fuss.

the little critters are putting on weight fast, and the tiniest ones have followed the fatter ones to my house. i'm feeding them a substantial part of my budget, but my heart breaks to know they will starve to death this winter. there are no berries and people are bear-crazy, locking up their trash.

May every being have safety and the causes of safety~!





some of them have almost doubled in size in the 7 weeks i've been feeding them~!

Gus, thanks so much for sharing! I love wildlife! I used to feed the rabbits and had made pets of them. However, the population grew so, the neighbors were very unhappy. A neighbor baited them into compassionate traps and moved them. It's against state law to do this because even though compassionate traps are used, the majority of rabbits are too disoriented with the move and cannot be safe. The majority perish. Thus, the best thing I could do was to stop encouraging them from hanging out with me because doing so means they fall prey to my neighbor and may get moved and lose their lives. I deeply miss them. When we move again, we hope to be in an even more rural area so we can have more wildlife on the land.

ENJOY the wildlife!


WC

[Wild Coyote]

Originally Posted by spondiferous

Christina - good luck with your meds. I know it can be so frustrating. I hope you can find something that works for you. I will be thinking about you.

Gus, I love your critters! So sweet! And I get it. We're surrounded by animals here - bunnies, deer, raccoons, squirrels, all kinds of birds - and I worry about their wellbeing all the time.

Jan, I'm sorry to hear your dental stuff is still such a problem. I know this has been going on for a long time for you. I hope they can help you figure out what to do in a way that works for you.

WC - good luck with the MTX. It sounds like you live somewhere beautiful, though that could just be my bias since I've spent most of my life within easy reach of mountains and I know how wonderful they are. Hopefully you get to go out today and experience them firsthand.

Hope everyone else is doing okay today. Cake, I hope you're managing to stay safe from the fires, and not too heavily affected by the smoke and whatnot.

The appointment was good. Originally I just went because I needed forms for my university, to register with the disability resources centre. Even though i'm withdrawn I'm still going to file them. Picking them up is one of the things I did today. So I did the hearing test and he gave me a new pair of hearing aids to trial and they're not perfect but they're a heck of a lot better than the ones I already have. I wasn't expecting that at all. To be honest I've had so many things wrong for so long that I've given up hope that anything can help, and I'd kind of fallen in a rut. But anyway, I was going to get the aids, but the ministry of social assistance (the regulators of disability assistance in my province) doesn't cover any aids above $4000 (for the pair), and only every 3 years. So I was going to have to pay $5300 out of my own pocket and I was going to do it but then I withdrew from school and didn't think I'd have the money. Well it turns out that they're going to cover $4000 of it so I'll only have to pay the difference, AND I can get a yearlong payment plan! No interest or anything. So I'm getting new hearing aids next Friday! So excited.

Anyway, I came home and got a bunch of stuff done (not sure where I got the energy...) but now I'm exhausted and taking a break. I'm determined to get a load of dishes going before I settle down for my nap.

Wishing you all ease and light.

GREAT NEWS!
I am glad it went so much in your favor! Wow!


WC

[spondiferous]

Okay so this might sound kind of weird, but those of you who nap, how do you do it? I've always despised napping because it makes me anxious but I need to be doing it now and it's hit or miss. It takes me upwards of an hour to actually fall asleep, and then I need to get at least 3 hours in order to feel like I've gotten what I've needed out of it. Which is fine - the duration, that is. I'm just wondering if anyone has any tips for how to more consistently fall asleep. I'm lost.

[Wild Coyote]

It's another gorgeous Fall morning here! The sun is bright, the air is crisp and the colors are brilliant! This is my favorite time of the year!

Spondi, I am sorry I don't have an answer for a reliable napping strategy. I try to stay away from napping so I can sleep at night. I've been having a lot of insomnia lately, even with sleeping meds at bedtime. It's likely due to stress and meds changes, in my case.

I am going to try to take my mother on a foliage tour today. It will depend upon whether she is feeling up to going. Some of you know my mother lives with us. She was too lonely once my stepdad had passed on. My husband is often sent out on the road for his work. It's nice to have my mother around while he is away, too. It all works out well.

I hope everyone finds Peace, Comfort and Joy in their day today!
May we each feel surrounded by Love.


WC

[spondiferous]

WC - that's how I've always been too, I prefer to wait until nighttime to sleep. But for some reason even when I do end up sleeping late with napping (i.e. 5 pm) I'm no less tired at bedtime. So that's my first clue that I need it. But also no matter how tired I am at bedtime it doesn't guarantee me sleep anymore which is so frustrating because in the past, no matter how bad things got with mental or physical health, I always had a full night's sleep to look forward to. It was always a built-in reset button, really. Now, not so much. Although I slept okay last night.

I did yoga this morning. I used to do it all the time. I find it's one of the only forms of 'exercise' I can do that actually benefits my body in every way. It's been a long time since I've done it though and it felt weird. But I'm looking forward to making it a regular thing again. It helps everything: body, mind, etc.

Hope you all have a good day today.

[January]

WC, thank you for your very kind words. You touched my heart. You really did. I love autumn, too.
It's my very favorite time of year.Cherish every second you have with your Mom. I lost mine seven years ago the day before my birthday. Even though we didn't always get along, I miss her so much. I am so happy you can spend time with your Mom.

Spondi, I'll try to think of some good nap time hints. I nod off all the time!

I have another Dr's appt. today. I'll let you guys know what happens, but first I wanted to write and ask if anyone has heard anything from Cake. I watched the news and it's dire out there where she lives. I am worried about her. Have any of you heard from her at all?

[Gus1234U]

last nite i tore a ligament in my right eye, diabetes, high blood pressure and heavy lifting... wouldn't you know, both eye docs take friday off in this hamlet~! couldn't they trade, one monday and one friday ? ?? anyway, it's better this morning, but i don't dare risk blindness, so off to the races Monday morningl. i couldn't get there on the little bus... so i'm riding with Paratransit, at 4x the cost.

wish me well!

[spondiferous]

Jan - good luck with your appointment today. Let us know how it goes. Hoping you get what you need out of it. I have not seen/heard from Cake since their last post here.

Gus - I did not know it was possible to tear a ligament in the eye. It sounds painful. Wishing you well, indeed.