Fibronaut At Home

Glutton for Gluten-Punishment

When I first went gluten-free I made a joke about not eating chocolate cake in front of me. Well, in the last week, chocolate cake has been under my nose twice and I couldn’t help myself. My three-year-old didn’t want the rest of her cake and I couldn’t let it go to waste. What kind of example would that be? At the same birthday party I also ate a mini turkey sandwich. It wasn’t my fault. There was a little umbrella stuck in each sandwich. They were too cute to resist! I arrived at the party looking six months pregnant and I left looking ready to pop. I should mention that I’m not pregnant, I just can’t get rid of this tummy! I’m not sure if the pain I felt afterwards was from eating the gluten or from driving the 20 minutes to the party and following my three-year-old around a splash-park that she refused to get splashed by. I’m still having bouts of pain even when I don’t have any gluten.

I finally finished preparing my appeal to the disability company, with my hubby’s help. I’ll let you know how that turns out.

I know that walking is supposed to be the most gentle exercise but I hurt so freaking bad after a two-block walk to the library. I didn’t know if I’d make it home I hurt so bad. Now I’m so exhausted that I feel like I’m going to fall asleep. Typing this, there is not a muscle in my legs or arms that isn’t aching.

I was recently given the advice to not think about the pain. Yeah. How am I supposed to do that exactly?

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Duh!

I ate two hot dogs with buns. The buns were made of enriched wheat flour, also known as what I’m not supposed to eat. My hubby says relax and don’t think about being in pain. Forget that your head feels like it’s swelling up and the feeling is slowly moving down your body. Don’t think about all the pain in all your ligaments. First your wrist, then your knees, now your hips, elbows, shoulders. I love hot dogs! Can’t type any more.

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What is Fibro-fog?

Fibro-fog is dropping a full laundry basket on your toe because you have no reaction time to pull your foot back, even though you looked down and thought about it. Fibro-fog is forgetting the hell you go through every time you do laundry, so you do the same thing, like picking up a full laundry basket or folding a whole load at once and then wondering why you have spasms in your neck and shoulders, like it doesn’t happen every time you do laundry.

I’ll have more on Fibro-fog later. I hurt too bad to type any more.

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Grumpy

I have to apologize to my husband and kids for my behavior this morning.  I was grumpy with a capital G!  I didn’t mean to be and I really tried to speak slowly so my children would understand the directions I was giving them and I really tried not to bite my hubby’s head off.  It’s not his fault (well, it sort of is) that our appointment this morning was at 11 am.  Way too early for me!  It’s not his fault that I hurt so bad or that I’m so tired (well, it sort of is, he wouldn’t let me sleep!).  It is not my kids fault that they have selective hearing and if they are looking at the TV or playing a game they have no hearing.  I was feeling weak, tired, hurting everywhere and was trying not to focus on that.  So, I’m sorry I yelled at my little angels and gave them dirty looks when they weren’t opening the van doors fast enough while I tried not to drop the littlest of my angels.  Even typing this is too much.  Thankfully the appointment was cancelled before I had to make the drive into town.  I was making it up to my kids by letting them play XBOX.  They started to fight, I made them turn off the TV and I’m pretty sure I hear the beginnings of a water fight in the bathroom.

If I needed any proof that working isn’t an option I got it from my frenzy of research and writing and phone calls I did to combat my disability company’s actions.  I hurt so bad yesterday, then we got a rainstorm the night before last and last night.  Pain times a thousand.  I just moved my heating pad from one area to another.  Right now I have pain in my legs, ankles and in my hands.  I had really bad blurry vision yesterday.  So bad that it looked like my little girl had two sets of eyes.  My hubby had to take off of work to drive me to acupuncture and I feel like it’s coming on again.  Anyone ever had that happen?  My husbands Aunt has Fibro and when she started having blurry vision, she had to go off of Lyrica.  There’s lots of clouds, so that might explain part of why I hurt so bad.  I don’t even have to check the forecast any more.  Maybe I could get a job as a carny.  I’ll guess the weather from the inside of a padded room with no windows.  That sounds more like the funny farm.  I’m blathering now.  Have a great day!

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Fight for my rights!

There is nothing that pisses me off more than a bully.  Right now, my disability company is the bully.  Picking me apart because of the incompetency of one doctor.  I was diagnosed by a rheumatologist at National Jewish in Denver, who did the tender points examination and said I was positive for every point.  The doctor said “I do believe that the patient is suffering from chronic pain syndrome (fibomyalgia).  Suck on that (big disability company)! With the help of my husband, I will be David with my slingshot, firing against a Goliath of a company.  They probably have more lawyers and doctors on their payroll to figure out how to screw the little guy than they do people to help their customers.  They are supposed to be a “back to work company”, which to me means they don’t care if you’re sick or not, they just don’t want to pay you anymore.

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Gluten Intolerance

I haven’t actually been diagnosed, except by my very wonderful acupuncturist, but having been off gluten for a month, I can report that I do feel much better.  If I needed any confirmation, I have it today.  We had dinner at Red Lobster last night and having been shut-down on a gluten-free menu so many times before, I didn’t even ask for it.  I had the maple glazed chicken with wild rice pilaf and broccoli.  This morning, I woke up hurting much worse than usual.  I called Red Lobster, had it confirmed that they do use wheat flour in the glaze but that they have a gluten-free menu that you can ask for.  So, if you’re thinking of going gluten-free, be sure to ask, even if the majority of people look at you like you’re speaking another language.

In the meds front, I’m trying to get off of the suboxone that I’ve been taking to help with the withdrawals and pain associated with addiction to opiates.  Not that I’m an addict.  I haven’t had one craving for my old pain pills, which didn’t help my pain at all.  Thanks to the neurologist that I used to see, as I think I’ve mentioned before, I was on narcotics for no good reason.  He was a jerk, who didn’t believe I was sick, so I’m glad I’m not seeing him anymore.  When I went to my new pain doctor, he explained that someone with fibromyalgia should never be put on narcotics.

My disability company called me yesterday to inform me that they would no longer be paying my claim.  No doctor filled out the work restrictions and there isn’t sufficient evidence to support my claim of fibromyalgia.  First of all, I didn’t diagnose myself, the a fore mentioned douche-bag, I mean, neurologist said that’s what I had.  Second of all, I called my current doctor, I’ll call him Dr. Wonderful, because the combo of him and his nursing staff are the bomb, and they never received the fax requesting work restrictions.  The disability company goes by the national norm for my job, which they consider a sedentary position and they think I can do that.  They don’t look at my specific employer and what they expect of me, which was to do the job of three or four people.  They look at what a loan processor is, probably at a big company, where everyone sits in their cubicle all day.  That was nowhere near what was expected of me, not to mention that doing the job of three people gives you the stress load of three people.

They also called me on a Friday afternoon, to tell me that they’d be mailing me a letter and I could see it then.  I was seeing red at this point, but did call back to ask them to fax it to me.  Reading the letter made me even more mad, especially the comments that the douche-bag, I mean neurologist, made about me walking with my young child.  Not carrying her.  Holding her hand and walking with her.  The ass also said that I always seemed better after the appointments and never seemed fatigued.  Could it be that I was more warmed up and able to move better after having been up and around?  How could he tell me that I needed to exercise and walking was a good exercise and then damn me by saying I was walking better at the end of the appointment?  I do have fatigue!  Every day!  Is he with me 24/7 to see that?  I guess I should’ve cancelled my appointments on my good days and only gone in on my horrible ones!

Lastly, I’m dealing with the shock of the mass-shooting at a theater that I used to go to, in my home-town of Aurora, Colorado.  It is 10 minutes from my Mom’s house and 2 minutes from where I used to work in high school.  The guy lived 5 minutes from my Mom’s house.  I just can’t believe that this would happen.  He killed kids.  My father-in-law wants to take my kids to see Batman today and I want them to go and have fun, but I’m scared.  What if there are copy-cats?  I’ll go see Ice Age with my three-year-old while my hubby and father-in-law take the older kids to Batman, but I’ll be worrying about them the entire time.  I really hope that people don’t judge Aurora or Colorado badly, from this one incident.  I have to point out that this person was from California and was only in Colorado going to college.  I would like anyone reading this to say a prayer for the victims and their families.  Hug your kiddos and loved ones a little tighter, even if it hurts.

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