[January]

((((( Bubbles )))))

Only you know in your heart what you can do.

[Septembersrain]

Hi everyone. I'm sorry I haven't been around. I've been dealing with POTS. I feel like I'm a medical unicorn. Horseshoe kidney, fibromyalgia, POTS... What's next!

Gee wiz. Today my mother would of been 65. She died in January of this year, hard to believe she's been gone almost a year.

The pain is pretty intense but I am more focused on my passing out, feeling like I'm stepping off an elevator, and the nausea... Ugh.

I feel insanely lousy today. I sure hope the rest of you are having a way better day than I am. *Hugs everyone*

Sent from my iPhone 6s using Tapatalk.

[LettinG0]

(((((Septembersrain)))))

So sorry for your pain...and your loss.

[cakeladie]

My pain level is at a 10 right now and I lost my debit card I called it in last night I used it at the bank yesterday but between the bank my grandmothers and home it's gone. All I wanted to do was buy a 99 cent book for my nook.

I called it in and they are sending a new one

Good lord I can not catch a break

[Septembersrain]

Originally Posted by cakeladie

My pain level is at a 10 right now and I lost my debit card I called it in last night I used it at the bank yesterday but between the bank my grandmothers and home it's gone. All I wanted to do was buy a 99 cent book for my nook.

I called it in and they are sending a new one

Good lord I can not catch a break

Hang in there! At least you caught it before the card got all your funds spent by some stranger with no morals.

I hear you on the pain. The medication for my heart seems to be increasing my pain for fibromyalgia. My regular meds aren't even helping me sleep now. I hope we both find a reprieve from this misery soon.

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[January]

((((( September )))))

I'm so sorry for your pain and the loss of your beloved mother. I sincerely hope the pain of both eases.

((((( Cake )))))

I'm sorry you lost your card and hope the replacement comes very quickly. Book nooks are awesome! I'm glad you have one. Take care, dear Cake.

[January]

((((( LettinGo ))))))

It's so good to see you.

Let's all keep

[LettinG0]

Thanks January.....I lurk a lot

UGH! Had stomach virus last night........died three times

Now I have come on into work because we have a point system and I couldn't afford to get any points........ARGH!

Ah, well.....

[lizardlady]

I'm so sick of hearing myself whine about being sick.....

I wasn't supposed to see my PCP until the 18th. I called today and bumped the appointment up to this Friday. My sinuses are both plugged and draining. Am coughing because of the drainage. Chest is still tight from the bronchitis. I have no appetite. Am having trouble keeping down what I do eat. What doesn't come back up goes shooting through. Sorry if that was TMI for anyone. Am having body aches and don't know if they are from the fibro or from whatever else is going on. Add to all that I'm exhausted.

Meanwhile work just keeps hammering me. I worked until midnight last Thursday night because of computer problems. Then there's the whole "gotta make numbers" dilemma. Boss says not to push myself, but make sure I get my numbers. Then they schedule meetings, etc. that prevent me from going after the numbers.

I'm just plain sick of all of it!

[cakeladie]

Liz I am so sorry

I think I have bronchitis again and I have no energy to go to the doctors. Heck I haven't been to the grocery store since before we left for our trip but I have to go tomorrow.

I am coughing nose draining and just plain hurt. It hurts to swallow. And what a time for California to get cold and rain. The last 2 days we were in Florida the nights where cold and rain on one night and yes we were out in it. Not by my choice but ......... Then the plane was cold to the point I hold my hood up on my sweat shirt.

Usually we make a big to do about Christmas tree etc. with the changing of the bedrooms and the painting and me hardly being able to move Ken said maybe we will skip putting everything up.

One thing I thought I would share with you guys is something my rhemy said. I told her the pain was so bad that my bones hurt. People with lupus have to stay out of the sun and you get a lot of your vitamin D from the sun. Every so many months she checks mine and it's always low but it's at an all time low. So I take something once a week for it. I was wondering if anyone else has had theirs tested. It could explain some of the pain.

Anyway you are all in my thoughts and prayers.

Sending you hugs

[~Christina]

Cake I am sorry your feeling so bad ! Screw everything.. Seriously stop doing anything for anyone !

I had my vitamin D checked about 6 years ago it didn't even register on the blood test. Eventually with loads of suppliments it increased to a low level and refused to budge any higher.

[~Christina]

Liz.... Sounds like you might need a Steroid to help kick that shyt outta your system. I always ask for the Steroid shot and rochephin shot and the Medrol dose pack .. 7 day steroid pack.

I hope your feeling better really soon .

Letting go .. Im sorry you had to deal with that nonsense.. Ugh no fun , no fun at all . !

Gentle hugs everyone

[LettinG0]

Thanks guys....

I am better today.....but that sort of stuff always kicks my fibro up....hurting a good bit today.....

Liz and Cake....so sorry you guys are feeling so rough right now....hope you both get some relief!

[January]

I am supposed to take the Vitamin D pearls, but they are so expensive and they are not covered by my insurance. So, I take 4 Vitamin D3 pills a day, which are 5,000 IU a pill. They are a lot cheaper and I get them from Puritan's Pride. You can usually get really good deals on them. My D levels are fine with them.

Also, all of you need to have strept tests done. I know the swabbing is nasty, but have it done. Also, have a strept culture done. My regular tests keep coming up negative, but the culture is positive....again. This is the third time in less than two months. The Dr. said this type of strept makes you feel like you have mono. I agree.

I hope everyone gets well and that you all have happier days. We will keep

[lizardlady]

Doctor appointment later today. Gawd I hope she can do something about how I feel.

First I have to go the the agency's annual "Winter meeting". We're not allowed to call it our Christmas party. I'd rather stay home and sleep, but attendance is mandatory.

[January]

((((( Liz )))))

I hope so much your Dr. can help you. Don't forget about the strept tests!

Winter meeting - How about they call it Christmas Party and let the ones who don't like it not attend? I'm sorry they changed it on you and I'm sorry you must attend. I hope you at least have some good food and maybe a gift or two.

Please let us know what the Dr. says.

[lizardlady]

Jan, since the CEO who created our agency was Jewish. I'm not surprised it's called the "winter meeting." Personally, I don't give a rat's little back foot what they call it. I think it's ironic that they hold a meeting that no one wants to attend so they can honor the hard work we do. What most people I've talked to wish is that they'd give us the day off with pay or a bonus and forget the stinkin' party.

I barely got anything to eat. The talking part of the meeting went on f-o-r-e-v-e-r. They didn't let us go to the buffet until 10 minutes before I had to leave for the doc appt. I made a point to be at the head of the line, grabbed some food, wolfed it down and bolted. No prizes. No goodies.

The doctor appointment got off to a rocky start. I was coughing my head off when the nurse took my blood pressure. He was all excited about how high it was. I pointed out I'd been coughing, but he ignored that. The doc came in looked at the recorded BP and said something about how high it was. I pointed out I'd been coughing my head off. She waited a few minutes and took it again. I was back down to normal.

She listened to my chest and said the bronchitis is continuing to improve. She agreed I have an upper respiratory infection going on now. The sinus drainage is causing the current cough. She put me back on antibiotics and steroids. Told me to start using Flonase in my nose too. Then she told me I need to stay home from work a couple of days. I explained I CAN'T take time off right now. If I don't get my numbers for work I'm going to be in deep poop. I'm going to work short days next week and see if that helps.

[cakeladie]

I feel for you Liz. We never had a Christmas party or holiday party until we got this new chairmen then we had to have a party and if you did not go then you were on the naughty list for along time

The last couple of years I worked the party was kinda of joke. We had to pay $5.00 for each ticket. The goal was that if we had to put out some of our own money then people would show up. Before that people would RSVP with a plus 1 and not show up. Once you showed up you got a gift card for $5 for Starbucks or Jamba Juice. They also had some drawings which was rigged.

I hope you feel better. I was up at 2 am sacred to death with thunder lighting and hail. This California girl was not happy. No rain tomorrow but more on Sunday. Hubby is going to pick up my meds and it looks like I am going to have to call the doctor and get some antibiotics or something. Not happy because I do not want to leave the house.

Ok I don't complaining

[Twilightsky]

So Sick lately that is why I have not been here. Between the fibro MS and Spinal Stenosis. One acts up then they all do. Love n hugs and Happy HolidaYS TO all. <3

[January]

Well Liz, and all, I'm embarrassed. I didn't mean to be so rude when I said it should be called the Christmas Party. I'm sorry it was so horrid for you. When I was able to work, I was in charge of our Christmas Party and we had a sit down banquet with a special meal and presents for our employees. It was wonderful! Ah, those were the days....

I hope your antibiotics work quickly, and you feel better very soon.

Cake, I hope you get your antibiotics and that they work very soon.

Twilight, it's nice to meet you.

[Pierro]

Originally Posted by lizardlady

Jan, since the CEO who created our agency was Jewish. I'm not surprised it's called the "winter meeting." Personally, I don't give a rat's little back foot what they call it. I think it's ironic that they hold a meeting that no one wants to attend so they can honor the hard work we do. What most people I've talked to wish is that they'd give us the day off with pay or a bonus and forget the stinkin' party.


I barely got anything to eat. The talking part of the meeting went on f-o-r-e-v-e-r. They didn't let us go to the buffet until 10 minutes before I had to leave for the doc appt. I made a point to be at the head of the line, grabbed some food, wolfed it down and bolted. No prizes. No goodies.


The doctor appointment got off to a rocky start. I was coughing my head off when the nurse took my blood pressure. He was all excited about how high it was. I pointed out I'd been coughing, but he ignored that. The doc came in looked at the recorded BP and said something about how high it was. I pointed out I'd been coughing my head off. She waited a few minutes and took it again. I was back down to normal.


She listened to my chest and said the bronchitis is continuing to improve. She agreed I have an upper respiratory infection going on now. The sinus drainage is causing the current cough. She put me back on antibiotics and steroids. Told me to start using Flonase in my nose too. Then she told me I need to stay home from work a couple of days. I explained I CAN'T take time off right now. If I don't get my numbers for work I'm going to be in deep poop. I'm going to work short days next week and see if that helps.

Hey lizardlady, I think you are a tower of strength the way you keep going.


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[lizardlady]

Thanks Pierro. I sure don't feel like a tower of strength. I feel like a pile of poo.

[~Christina]

I've been pretty non verbal lately, My Bipolar brain has been very very loud.... But.. I want to give an update on the IV infusion situation.

I had one done on Tuesday , it dropped my pain from a 8 to a 3-4. HUGE relief. I scheduled for another on Monday as the nurses there said what they are seeing thats it builds up over time.. so I hope to get to Monday with still this pain of a 3-4.

I cant get super excited as the previous Iv Infusion gave me excellent relief for 5.5 days then it was a raging 8.

So to sum it up ... I am a bit hopeful that this treatment is going to be something that offers me much needed decrease in pain.

An FYI ... It is covered by medicare .. what I owe is roughly 30.00 per infusion ... So it's pretty reasonable I think. Worth a shot.

I wont go by names but.... I hope all your are finding some relief and peace.. Hopefully I will quiet my very loud Bipolar head and get back to being more active and supportive.

Everyone please be kind to yourselves, always !

[Septembersrain]

Hey guys! How is everyone? I think these holidays are being hard on all of us. I really wish it would snow where I live. That would be fun.

I'm bloated, constantly starving, feel like I'm falling over and dizzy all the time. Thankfully I'm passing out less than ever. Feels good to not wake up crumpled on the floor.

The pain as usual is irritating and makes me feel like I'm crazy. However, I really wish my work would hurry and just approve me for work from home. I'd be able to start being productive again.

My grandma is giving me her elliptical. So I'll start exercising again. I'm a little scared of passing out on that machine but both my rheumatologist and cardiologist recommend light exercise to help with Fibro and POTS. So let's see how it goes!...

Does exercise help any of you?

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[lizardlady]

Originally Posted by Septembersrain

Does exercise help any of you?

Since I have fibro (exercise is recommended) and chronic fatigue (rest is recommended) I struggle to find a workable balance. I found things like yoga or Tai Chi help. It's gentle and gets me moving but doesn't trigger exhaustion.

During the warmer months I potter around in the yard too. Again, it gets me moving which helps.