[childofchaos831]

Hurting right now... can't seem to get comfortable at all, unless I'm in my bed...hoping it gets better quickly.

[Wild Coyote]

Jan, How long have you been on methotrexate? Does it give you side-effects?
I've been on it all year, save a 10 week break in the summer. I'd restarted it 4 weeks ago. I inject it in order to limit GI symptoms. I also take an anti-nausea med for the first day or two of injection time.

So sorry about the disturbances with your housing. I'd be upset if I had to live by someone else's routine. My mother lives with us. We honor one another's needs/routines, which are not all the same.

Childofchaos, I hope you are getting more comfortable by the moment. So sorry you've been so very uncomfortable.

Love all around!

WC

[Gus1234U]

[January]

Child, I hope you find comfort soon.

WC, I've been on methro for about a year now. I have so many GI issues that I honestly can't tell you if the methro makes it worse. I didn't know you could inject it. I take Zofran for nausea.
Maybe you could ask your Dr. for some. It really helps.

I've done a little bit of errands and a little bit of house cleaning today. That's a major improvement. I may pay for it tomorrow, but I was out of meds. I'm down to dry toast, cheese, and just a couple more things that I can tolerate. They don't sell lactose free cottage cheese in this area or I'd try some of that for protein.

Belle is doing great. The neighbors are driving her crazy and I don't blame her. (WC, Belle is my little pup, and the thread's mascot. )

[cakeladie]

Not sure where to start.

Kiya are you ok? I know I haven't been on much but I miss you and I hope everything is ok.

Liz you to I hope you are doing better. I heard Florida is to get hit again. I am sorry for all the work you have to do. The pain must be outrageous
F
Gus just love love love your pictures they bring a smile to my face

For the new people Hi and welcome. This is a pretty tight group of people. No one on here judges anyone

Jan I am sorry for everything you are going through. I hope you got your apartment back in order. I have been trying to declutter and wish Christina was here to help . Keep us posted on what's going on. Also if you are having trouble getting someone to take you to appointments there are solutions out there and we can work together to find them.

Christina my heart just breaks for you. I know you are pretty non verbal right now just know we love you and if you need anything reach out to someone we are here for you.

Now not sure I said this before but since someone posted it I am going to bring it up again. Mexotrexate destroyed my life. I was on it for years and because of that it has damaged my lungs and my liver. Did it help me yes. I would have 2-3 good days and 4really bad days. The issues did not show up in lab test. They way they found it in my lungs was because I got a cough. My pulmonary doctor was out of town so my rhemy ordered s CT with contrast. It was summer time and my rhemy cuts her hours in summer time due to the fact that she had school aged kids. 2 months later I asked about the test and she was shocked. I had to go in and not get one but 2 CT scans STAT. Then I had to have an ultra sound of my liver. It's not good and the doctor said it was all mexotrexates fault so please please be very careful.

Well my meds are starting to kick in so I best sign off for now.

Sending positive vibes and hugs to everyone

[Wild Coyote]

I'd had a very long day on Friday. Fridays are set aside for my mother only. She has lives with us since my stepdad passed 6 years ago. She was too lonely and too deep in grief to live alone. Some Fridays are all "recreational," while others are all errands. Yesterday was all errands. She is awaiting a second hip replacement, which means I am doing more and more to try to help her. I am more than happy to help; I just get tired and in more pain.

Cake, thanks for the warnings about methotrexate (MTX). I am very sorry for what happened to you. I get frequent labs. I take a 2.5 month break in the summer. It's scary. I cannot walk w/o it. Seriously. The only other options I have left now are the biologics, which are potentially more dangerous for me, I feel. It's a catch-22. I deeply appreciate your sharing. What do you use in place of MTX?

Jan, thanks for introducing me to Belle. I'll bet she's a great companion!
I use a different anti-nausea med because dystonia is a potential side-effect of Zofran and I have a neuromuscular disorder which makes me prone to dystonia. My GI is very sensitive; this is why I inject the MTX. I am sorry your diet is so restricted!

Gus, your pictures are beautiful and vibrate with positive energy! Thank you!

Christina, Sending positive vibes. I pray for your healing.

Liz, it sounds like maybe you are getting hit with challenging weather? Stay safe.

Child, I hope you are feeling better with each passing day!

Kiya, we have not "met" yet. I hope to meet you soon.

I think I have included everyone. If I've missed someone, my apologies.

I hope everyone experiences at least one moment of joy today.


WC

[Gus1234U]

i adore the art of Bev Doolittle~!

may we all find beauty in unexpected places~

[Kiya]

Gus- I love Bev Doolittle, but I've never seen the bear one red before- the original is cool because your eye follows the paw prints in the snow off into the distance before you realize the bear is in the bush, looking right at you

[Kiya]

Hi all (and hello new folks )
Ok so I just caught up on the five pages worth of posts and oh my goodness everyone! You all have so much going on. Lots of support and hugs! Far too many to address individually but my full support as always to everyone.
Life for me… I have had pretty severe state of confusion almost to the point of incapacitation. I almost couldn't drive and my providers were concerned. Two almost put me in the hospital. I think it is med related and so does my GP. She wants me to have a neuropsych evaluation and see a new neurologist. As well as a new psychiatrist – I don't think I've ever seen a psychiatrist; just psych nurse practitioners.
I did have another night in psych ER last weekend I think… Right as my confusion was hitting full on. But with the medication titration that I am doing on my own since I can't get in to see my provider until next week sometime, I am functioning a little better I am also trying to get into a fibromyalgia clinic to see what can be done other then "take Advil with coffee and Prilosec".
I've been doing physical therapy for my foot, back, and now pelvic floor as well. That last one is pretty triggery for me but necessary after the hysterectomy. My mom has been helping me some with the chronic fatigue and household chores. I have been too tired to be on the net much and my attention span has been absent.
I think that is everything for me oh and I also had some sort of viral infection that put me out for a week but that is almost completely better.
Anyway, with all the chaos in the world and our own personal lives, please take good care of yourselves! Thinking of you all

[lizardlady]

Hello all!

Gus, I never heard of Bev Doolittle before. I love the artwork!

Hurricane Nate didn't come near me. We got a lot of rain from feeder bands the last few days, but it made landfall around Mississippi and Alabama.

I'm sorry so many of us are struggling so right now. Am not going into how I'm feeling because it's SSDD. I get tired of hearing myself complain.

On a happier note, Woody (the horse) is doing better. The swelling is going down in his leg. I rode him for his owner for a few minutes yesterday to see how he did. Good so far. We might have bought some time.

[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