[January]

((((( Christina )))))

It's so good to hear from you. I hope you continue to be safe and find a way to make the changes you need that need to be made.

You are very important to all of us.

[cakeladie]

((((Christina)))). Be safe that's what's counts

Jan I hope you are feeling better to

I have been staying away to kinda just feeling sorry for myself I am so tired of hurting. I have 2 doctors appointments today and a nerve test. I had an MRI least week no fun

[lizardlady]

Hi everyone. I haven't been online much. Long hours at work lead to coming home and vegging. Didn't post here because it would have been more of the same old, same old. Some times I get sick of saying it.

Cake, no words of wisdom, but a heartfelt hug for you.

Jan, sorry you're not well, but YAY that they are done pulling teeth!

Christina, maybe instead of trying to fit a square peg in a round hole you need to look for a square hole.

jaynedough, thanks for the quote. I wish I could internalize it.

[January]

My friends, have any of you been on methotrexate? I saw the rhuemy today. I do not have rhuematoid arthritis, but the Sjogrens is kicked me while I'm down. She gave me a hand out on methotrexate, told me to go home and read it and let her know if I want to try it. Well, I'm ready to try anything within reason if it will help the pain.

Have you heard of it and can you let me know quickly?

Many, many thanks!

[January]

By the way, I would rather hear from each of you every day even if you're feeling lower than a sinkhole. We're all in this together and we should stick together. I love each of you.

[Septembersrain]

Hi January, lizardlady, cakeladie, Christina, and anybody else I missed (Sorry!).

I'm alive. Found out that fibromyalgia and POTS are very similar and they have deduced that I probably have both! So two pain inducing conditions, one with syncope the other with... Just more pain. I feel like I can't ever be comfortable. Doesn't matter where, the temperature, the texture, the sitting or standing, trying to sleep, work out, I'm just not able to feel comfortable! It's very mind boggling and frustrating.

Hope you all are doing well.

Sent from my iPad Mini 3 using Tapatalk.

[cakeladie]

Jan DO NOT TAKE THAT DRUG

It's a chemo drug and one of the side effects is pulmonary fibrous after being on it for years I am now stuck with that deadly disease in addition to fibro lupus and RA.

Also they way I and most lupus patients have taken it is you take a dose on Friday night Saturday morning and Saturday night. By Saturday night I would be throwing up and the same on Sunday. I would not start to feel better until Tuesday or Wednesday only to have to start again on Friday.

I took this while I was working and I would end up missing work on Monday a couple of times of month.

Keep in mind it's a chemo drug so all the bad that happen with chemo can happen with this. Did it help to a certain degree or I would never have taken it for has long. It's kinda like your damed if you do and your damed if you don't. Does that make sense

[January]

Thank you, dear Cake. I'm so sorry you went through that with it. What a horrible thing to happen to you.

I didn't sleep last night and I'm a nervous wreck today. My understanding is my dose would be very minimal and I would take it only one day a week.

Did you start out like that?

[cakeladie]

No the way I started and the way most lupus patients start is one dose on Friday then Saturday morning then Saturday night. Since I got my dx of pulmonary fibrous I have not been on it since it caused the problems with my lungs and my liver. It caused cysts in my liver I forgot that part. Anyway some of my lupus first do take it once a week in the form of a shot.

In 2013 when my dads cancer came back he tried the chemo pills and it made him very sick. He told me he did not know how I could stand taking them for so long. And I just looked at him and said I had 2 kids to support a mortgage and a husband I did not have a choice.

Do some research on the drug and maybe try it if you want but please please beware of what that drug is capable of.

And ask me any questions if you want to do it in private that's fine to. I will not hold anything back. But I used to keep a pillow and a blanket in the bathroom from Friday night on till Tuesday. It was that bad for me but you might be different.

I will support you anyway I can

[lizardlady]

Jan, I think I know someone on methotrexate. I'll ask her about it.

[cakeladie]

The drug is sneaky and I know that really doesn't make sense but it is. I started with a cough and because people with lupus get fluid in the lining of their lungs I had to have a ct done. That ct showed the pulmonary fibrous and it also showed the problem with my liver. My blood test for my liver came back ok but the ultra sound was a different story.

So I warn everyone who is thinking about starting that drug that just because you lab work comes back ok does not mean everything is ok. I was shocked when I got my results.

[lizardlady]

Jan, I didn't read Cake's warning until after I posted about asking the lady I know. Haven't had a chance to talk to the lady yet, but Cake's warning would be enough to scare me off.

[lizardlady]

I'm pooped tonight in both senses of the word. Am tired beyond words. Combine that with something disagreed with my digestive system today. What didn't come out one end came out the other. A friend has an appropriate saying for the way I feel tonight "My backside tries to duck when it sees the TP coming."

[cakeladie]

Feel better Liz

[lizardlady]

Jan, I asked the lady I know about methotrexate. Turns out it was her adult daughter, who has RA, that was on it. She said her daughter got no benefit from it and it made her sick as a dog. She stopped taking it because she was not willing to spend days sick as a pup and not have any benefits.

[lizardlady]

Originally Posted by cakeladie

Feel better Liz

Thanks Cake. My digestive system is still cranky today. Am also worn out. It was one CRAZY week at work! TGIF!!!!!

[cakeladie]

I hear you I got a shot in my hip joint on Thursday my rhemy was running over an hour late which meant I had to wait for the pharmacy to reopen from lunch so it was hours before I got home and I tried to rest it yesterday but you know how that goes

[Kiya]

I think those are the same pills Colleen took - for lung cancer - she was also terribly sick and refused to take more. But Jan, you're taking a much lower dose right? Worried.

[Kiya]

Hi all (hugs to all that want some)
Been a long while since I've been in - been super sick, losing weight, not eating and not keeping in food since late April. Of course all my labs were ok (expect for liver enzymes high - likely due to gastritis pain that put me in ER twice) and potassium SUPER low that they gave me massive supplements.
Last week I had a colonoscopy and endoscopy with biopsies. Everything was "fine" but waiting on the biopsy results.
I think of you all and send support!!!

[~Christina]

Hey Everyone !

I just typed out a long update and it went " Poof" maybe its best it got lost.

Hope everyone is taken good care of themselves

[January]

Thank you Liz and thank you Cake. You guys are the best!

[cakeladie]

So you know how we told Liz those cortisone shots or what ever you call them don't hurt. Well I had one in my hip joint on Thursday and I still can't use my leg. Granted the doctor was running really late I was getting a tad bit mad but she told me when she did it I might have a bruise. Which is weird she numbed the area real good it had to go to the pharmacy and a couple of more stops before I could go home but once the numbing meds wore off lord help me the pain set in.

I have been using pain patches the last 2 nights but since they are only 12 hours on 12 hours off I like to use them at night. Hopefully the pain will be gone soon. I can't take much more

[lizardlady]

Good to hear from folks. Sorry to those who are struggling.

[lizardlady]

Cats woke me at 1AM Monday morning. Try as I might I could not get back to sleep. Came home and crashed last night. Fell asleep sitting up on the sofa. Woke myself when I dropped the book I was reading in my lap. Silly me tried reading again. Repeat process of dropping book and waking up. Shoved the book aside and went back to sleep. Woke up at what I thought had to be 2 or 3 AM. It was 10:30PM. Toddled off to bed and ended up sleeping through both alarms this morning.

This is a l-o-n-g way of saying I triggered a flare. I hurt like holy shyte and am beyond exhausted. Lord, but I hate this!

[~Christina]

Well after 2 weeks of pure hellish pain I was able to get my Lidocaine infusion and it brought my pain down to a 7 .. still sucks but I wasn't actively looking for ways to end my ride on this Merry Go Round.

My husband wound up in the hospital on Friday the 13 no less.. He came home and was literally out of his mind and wasnt making sense and broke down sobbing and look terrified but wasnt able to tell me what was going on. .. Yes drove him in a mad dash to the ER .. Stroke was a huge concern. CT came back clear but he still didnt know his name or birthday or my name. I was absolutely terrified. So the Lidocaine I got the previous day was totally gone .. Anyway .. long story short he the next day when he was able to make a bit of sense he said he had helped a friend fix some windows and the caulking has gotten jammed and the tube kind exploded and he inhaled alot and it burned like hell and it wound up all over his hands and arms...

So had to track down the actual stuff so the hospital was able to call poisen control and find out what if anything could help . No antidote , it just had to work out of his system but he needed to be monitored very closely to make sure his kidneys and liver were still okay.

So.... Moral of the story . Chemical poisoning is nothing to brush off ... Took him a week to really get over it and not have difficulty remembering things .

A 5.99 tube of caulking is now a bill of over 22,000.00 .. Did I mention he has no insurance? so yeah .. there is that . and since the state of Tennessee did not expand medicaid when Obamacare hit my husband isn't able to qualify for any help ... Also now the only income we have is my disability so there was/is no way to afford any plan that was offered.

My husband filed for disability last month because he has severe neuropathy in both feet and legs , very severe .. some days he can barely walk , he has emphemza and had broken his back twice. he had Bilateral Shoulder surgery in 2010 from injuries he had working for a large company and he has permanent impairment in both shoulders and they had no job that he could perform.. of course most people that suffer a workers comp injury soon after find themselves losing there job.

He lost 3 jobs in the past 12 months due to his inability to perform his duties and since no insurance the medication we can only afford was neurontin and that caused him such problems thinking and walking , he was drugged tested 4 times in one month as they really thought he was on drugs.

Well that is a long word vomit .. Sorry I tried to make this shorter but I think my Bipolar brain was hacked into pieces and skipping like a old warped record.

Gentle hugs to all