The Fibromyalgia check in thread.😀

lizardlady · Dec 12, 2015, 08:25 PM

Jan, I didn't think you were rude about calling it a Christmas party. We make a big joke of it at work. Saying annual meeting with an extra sarcastic tone. That sort of thing.

lizardlady · Dec 13, 2015, 02:33 PM

Gawd, I just have to unload. I'm not sure this is within community guidelines, but I just have to get it off my chest....

There's a thread where people are complaining about have to work 40 hours a week. They don't think it's right that people should have to work. Let me say upfront, I understand there are folks who can not work for physical or mental health reasons. I know many here fit that bill. That's not what I'm talking about. I'm talking about the one that are b i t c h i n g that work interferes with the other things in life they want to do. I want to tell them to grow up, put on their big girl/boy pants and realize that people have to find a way to support themselves! I'm so friggin' sick my doctor wants me to stay home and rest, but I'm so scared of losing my job I keep dragging myself in! Why do I drag myself in? Because I have to have the health insurance that goes with the job! Why do I need the health insurance? BECAUSE I HAVE MEDICAL CONDITIONS THAT MAKE MY LIFE HELL!!! Grow up children and welcome to the grown up world!

There there are the members who piss and moan in what seems like every post about how bad their problems are. THIS IS A FRICKIN' MENTAL HEALTH SITE WE ARE ALL STRUGGLING!!!! Kind of ironic that I posted that last since it seems all I do is complain in this thread, but I try to limit it to here and not spread it all over the forums.

Sorry folks. I just had to get that out of my system...

cakeladie · Dec 13, 2015, 06:28 PM

Liz I completely get what you are saying and if coming on this thread to vent helps you then it's fine. I wish I could still work. I wish I could go to the store when I want but I can't. I had another seizure today so I am stuttering.

It frustrates me to no end when someone is dx with lupus that they want to right away go on SSDI. It does not work that way. I worked along time with all of my illnesses until my body gave out.

Hang in there Liz.

January · Dec 13, 2015, 06:46 PM

((((( Liz )))))

I'm so sorry others have upset you so much. I wish I could give you a big hug and make it better somehow.

~Christina · Dec 13, 2015, 07:36 PM

Liz. I hear ya !!!

lizardlady · Dec 13, 2015, 08:22 PM

Thanks for listening ladies. I feel a bit better having been able to get it out.

I'm just so danged tired of being sick. Can you tell I start getting cranky when something like this drags on?

cakeladie · Dec 13, 2015, 10:40 PM

If they could only walk a mile in your shoes they would know what's it's like

January · Dec 14, 2015, 02:02 PM

So true, Cake. So true...

cakeladie · 08:26 PM

My back is killing me. Every bone in my body hurts and I need to see the rhemy this week and I am trying to figure out how I am going to do that and get things done around the house.

You know what's real sad I am going to have to pay someone to take me to the doctors

Septembersrain · Dec 15, 2015, 06:05 AM

So I'm still waiting for them to approve me to work from home. I wish they'd hurry up so I can be productive again.

On a different note, had an emergency cardiologist appointment. They wanted me to go to the ER but I didn't want to, I've been in and out of hospitals enough this year. They didn't help with diddly squat.

So now they're trying a beta blocker. My heart rate kept shooting up to 160-180 when standing up. That's higher than it was initially. They were worried I would cause myself heart problems if I kept going that way.

I took my first dose last night. I'm up at 4:30 a.m. and I feel like I've slept amazing. Apparently having an incredibly high heart rate can cause fibromyalgia pain to be increased exponentially.

It's too early to really celebrate yet but this is the first time in years that I've actually not felt my heart beating out of my chest, being overwhelmed with pain, and waking up feeling like dog poo.

How about you guys? Anything good? You all deserve something happy.

Sent from my iPhone 6s using Tapatalk.

January · Dec 16, 2015, 11:39 AM

I'm in so much pain today that I'd sit and cry if it would help... My knees feel as big as cantaloupes.

cakeladie · Dec 16, 2015, 10:04 PM

I am so sorry Jan hang in there. Remember what you always say this to shall pass.

I got my results back from my CT scan. Not sure if you guys remember I was coughing up blood a few weeks back. Anyway the CT shows additional lesions on my right lung and the mass that was there is bigger. The news could have been worse. My left lung is ok but my right lung is getting a little crowded.

Anyway I have a lot to think about. Chemo is an option doing nothing is another option. Lupus has hit every organ in my body so it's kinda hard to think about what to do.

But I do know this. You guys are awesome and when I ever need a pick me up I can come here. I have my lupus support group but I have you guys to. And others on PC like Yoda who posts the cutest pictures to my wall. I thank you guys from the bottom of my heart.

Kiya · Dec 17, 2015, 03:34 AM

Woah - I couldn't understand why I wasn't seeing any more fibro posts! Finally found the locked one... then searched for this one and I've missed 64 posts!
So HUGS to every one of you who wants one (or several) and know that I think of all of you!!!!!
I started Zoloft last week after hitting a super deep depression and had my first really good morning yesterday in years. And - you guessed it- overdid it. I was like "I want to exercise and get on a treadmill (which thankfully didn't happen), and do all this stuff." And I did a lot and wore myself out by noon. Moral: use energy wisely.
Tonight the dose increases, so we'll see what tomorrow holds. I'm still worn out and sore, but it is nice to not feel like a 1 on the emotional scale. And have some energy (at least in the mornings).
Wishing you all the best!

Kiya · Dec 17, 2015, 03:35 AM

Wait wait wait - Cake, you have lung cancer??? @_@... no, I read more... lesions....

@_@

Kiya · Dec 17, 2015, 03:43 AM

Liz - just read your rant

Truth! And the fact is, we'd all RATHER work 40 hours than be as sick as we are and either dying to just get to work to keep the job to keep the healthcare, or -in my case- pulled off work. Would I trade in a regular work week/life to be well? Hell yeah. Though mine is for mental reasons (DID; switching too much -due to stress- while working is becoming dangerous), I did have the more severe pain when I was working more hours and standing all the time. The migraines from the noise and chaos, the pain from trying to keep up, the trying not to cry and let it show.
Totally get it.
As of this week, I am not allowed to work. And I feel like I lost part of my identity - my last part. I don't know how I am going to meet my financial issues in the new year (talk about stress). Or my taxes or all the rest. Thankfully, I do have health care thru Medicare.
I'm glad you were able to speak and be heard, Liz.

LettinG0 · Dec 17, 2015, 08:32 AM

(((January)))

((((Cake))))

Hi! Kiya ---- careful with the overdoing....it is so easy to do on a good day!

Hugs to everyone.....take care of yourselves as best you can

January · Dec 17, 2015, 11:37 AM

Cake, will the chemo make the lesions go away? Tell us some more if you can.

September, please take care of yourself.

LettinGo, it sure is nice to see you.

Liz, rant away. We get it.

Kiya, it's hard to get used to not working. I still have problems with it, but I know I tried my very best to work and my body and brain just couldn't take it. It has to be enough. It just has to. You'll adjust and we'll all put our heads together to figure out your taxes for next year.

I know I'm leaving people out and I don't mean to. I'm sending love and peace to all of you.

cakeladie · Dec 17, 2015, 06:55 PM

The chemo could help but the type of chemo I would have to have I have had before. You have to be in the hospital for a day or two and it's very harsh. I am not sure if I can go down that road again. It's a lot to think about and all this running around I have had to do isn't helping anything. I am glad to finally be home for the night

lizardlady · Dec 17, 2015, 07:46 PM

After all my complaining lately, I thought I'd post something more positive. I think the meds are finally starting to work on this dingdang bug I have. I'm only coughing a little. My head is clearing up. And hallelujah I'm able to eat and keep food down! I'm far from 100% and looking forward to having the next two weeks off to rest, but I'm seeing the light at the end of the tunnel.

cakeladie · Dec 17, 2015, 09:23 PM

Yahoo. I am so happy Liz

Calamity Jane. · Dec 18, 2015, 03:22 AM

Hey everyone, you all seem to be going through bad times right now, so I just want to hug you all.
I wish there was a way to make things easier for you. I am sending loving and healing energy to all of you.

lizardlady · Dec 18, 2015, 07:11 AM

I think I spoke too soon. Spent the night in the bathroom barfing up what I ate yesterday. Today my head is plugged up again and I feel like poo.

Septembersrain · Dec 18, 2015, 12:50 PM

I'm sorry you guys are having such a terrible time this holiday season. All I want for Christmas is that we fibro sufferers get some darn relief from our pain. =)

Beta blocker is working pretty good for me. They may need to up the dose just a bit but for once, I don't feel my heart beating out of my chest. I'm tired but they said that's normal. The pain is hovering around a 4, really not bad. I'm going days without passing out! I went grocery shopping for the first time in a long time. I was able to handle it!

Now to get my finances back in order and move forward...

Sent from my iPad Mini 3 using Tapatalk.

LettinG0 · Dec 18, 2015, 02:53 PM

September....glad to hear it is working and you are doing better!

Hello, Calamity! Nice to see you.

((((Liz))) - so sorry you are so sick.

How is everyone else? Hugs.......

Calamity Jane. · Dec 18, 2015, 04:12 PM

HI LettinGO, nice to see you too. How are you doing?

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