Sunday, January 31, 2010

THE INSOMNIAC









The humidity is 73%

Is it any wonder that it's two in the morning and I'm wide awake?

I have a feeling it will be a very long night and I would like to be able to sleep so the circles under my eyes won't be down to my chin.

So here I am drinking Tazo Wild Sweet Orange Tea and I'm bummed that Starbucks has discontinued it for some Orange Blossom green tea crap that tastes the same as I've just described it.




To pass the time maybe I'll write the company and tell them they've made a BIG, HUGE mistake. This tea tastes like hot Tang and is very yummy and comforting. I'm down to my last box and now I'm scouring the stores and the internet to see what I can find. 

The silver lining to this is that I'll spend less money at Starbucks.

Crap. I want my tea. 

I want to sleep.




Friday, January 29, 2010

HERE WE GO AGAIN








63%


63 Fricking Percent!

This has been an unusual year with a number of  days where the humidity has been considerably higher than normal.

I just can't tell you what that does to me. Every time I take a step forward I take 3 steps back. I thought we were over the worst of it but when I was coming home this evening I felt my old familiar friend coming back.

Just a twinge in my hands.

That's all.

Just a twinge and an ache. Just enough to say hello and to tell me the barometer is rising and as it rises so will my pain.

I just better head it off now instead of fighting it and trying not to take pain medication. 

I mean........even on the weather channel they have the aches and pains forecast. Why should I be surprised? Weather has been affecting people since the dawn of time. A study that was published in the journal of rheumatology followed patients for one year and found that higher air pressure and humidity triggered pain.

So while I've been fighting the urge to put the covers over my head to try and forget the pain I think that for tomorrow I'll give in.

I'm going to go put my hands in hot wax and let the heat seep into my bones. I get a extra added bonus. Not only does it help the pain in my hands but it helps moisturize my skin.

I can't use my hands because of the pain but at least they're soft.





Thursday, January 28, 2010

WISH




Forty-six years.


We have been friends FORTY-SIX YEARS. How the hell did that time go so fast?


My dearest friend in the world has a birthday today and she hates them. I say they're better than the alternative. 


It would figure that this is a sucky year for gifts but if I could give her anything that I wanted to I would give her one wish.


I wish all her wishes come true.




Wednesday, January 27, 2010

CORE MATTERS




"At a certain point in your life, probably when too much of it has gone by, you will open your eyes and see yourself for who you really are." Miss Dodger - Phoebe in Wonderland.

I think this is the perfect way, for me, to find out who I really am. Chronic pain and Fibromyalgia has blurred everything so I'm not so sure who that woman is anymore. Like today.........it's raining AGAIN so pain has come knocking on my door with a vengence, however, I have resolved to not laying on my couch but looking at the rain with joy.

Did it stop the pain?

No.

What it did was help me to look beyond the pain. 

I am more than a woman with chronic pain. I am more than the picture that Fibromyalgia paints. If I can give hope or laughter to just one person then I'm happy.

Still in pain but happy.

Monday, January 25, 2010

WHAT CAME FIRST?





Studies are now seeing if there's a link between Fibromyalgia and Vitamin D deficiency.






I'm low in Vitamin D. 


Very low, as a matter of fact.


As I was reading through the information about Vitamin D deficiency it reminded me of some of the same symptoms that I experience with Fibromyalgia.


Your body cannot create Vitamin D. We need to get it through sunlight and in foods but the sad part is that we don't get enough. Not nearly enough.


What are the deficiency symptoms?


Muscle pain, low energy and sleep problems are the hallmarks of deficiency. Depression is also linked with Vitamin D deficiencies as well.


What got my attention is that deficiencies in Vitamin D can be linked to obesity as well. Studies have shown that weight loss does occur with increased calcium intake and since this vitamin is involved in calcium absorption it's reasonable to believe that weight gain would be  the next link in the chain. 


How do we get more D?


We need to get more unprotected sunlight. I was advised to get 15 minutes of sunlight, twice a day.


Eat egg yolks and nutrient dense fatty fish like sardines ( yuck....sorry, can't eat those). 


Take a Vitamin D supplement.


Is there a link?


The danger is that a huge number of doctors already believe that Fibromyalgia is a disease of neurotic women. Fibromyalgia is not easily diagnosed and never cured and Vitamin D deficiency is easily diagnosed and easily cured. To link Fibromyalgia as a Vitamin D deficiency disease is to again dismiss this problem as a quick-fix.


When I looked up Fibromyalgia and Vitamin D deficiency there were TONS of articles saying that Fibromyalgia has been misdiagnosed. All I can say to that is.......


What a crock.


This kind of thinking gets me on my soapbox.


I DO NOT LIKE PAIN. I DO NOT ENJOY HAVING MY LIFE LIMITED BY PAIN. I DO NOT LIKE THE FIBROFOG AND DO EVERYTHING IN MY POWER TO FIGHT IT.


To have this disease, once again, dismissed as a vitamin deficiency or the by-product of an over active imagination or neuroses is demeaning and insulting.





Sunday, January 24, 2010

WORD FOR TODAY





Quidnunc.


Just what I am.



WHEN LIFE GIVES YOU LEMONS







I really try to make lemonade. 


I really do.


I wish I was an optimist but the best I can do is:



I'm really not the lemonade type. I'd rather be a realist that way I'm never surprised. I do wish that people would not have agendas. I wish they'd be open and honest and that way decisions could be made on facts. You'd be on a pretty level playing field. 

Just weird agenda's today.

Friday, January 22, 2010

I SHOULD GIVE ZANAFLEX A FAIR SHOT








So much for Zanaflex.

I should be fair and give it at least a week but being my Typical Type A self and an immediate gratification freak, I want it to help me NOW.

So here I am awake, muscles cramping, humidity rising and pain building to an unbelievable crescendo and the Zanaflex isn't kicking in yet. I have to wait to take the pain medication so I thought I'd write for awhile.

Fibromyalgia sucks.

There are some characteristics we are born with. I've had perfectionistic tendencies all my life. I remember having my shoes placed in my closet by colors before I even started school. I drove my mother crazy by not wanting my foods to touch on the plate otherwise I wouldn't eat it. My makeshift home Dewey Decimal system.......the list goes on and on. If I'd known that my quest for order and perfection would lead to the pain I'm in today I think my life would have been different.

Did it really matter if my spices were in alphabetical order? Did it matter that video tapes and DVD's still follow that pattern? I am so much better than I used to be but some habits are hard to break.

I know in my head that the cortisol and adrenaline that must constantly be running through my system is BAD but that's me. Again, I'm a great deal better than I used to be but there are some things that just won't change.

No Help in LIfe.

It also doesn't help when you're unemployed. It doesn't help when disability denies you. It really doesn't help when you're used to making a fair amount of  money and you've drained your accounts dealing with an invisible illness that just loves to make your life chaotic.

I can live with a marginal amount of  pain. I've been doing that for years. When pain is coupled with insomnia and the pain is no longer marginal, that is a little tough to deal with in a cheerful manner.

Well for now I'll try to be patient and give the Zanaflex an opportunity to work.


.


HOPE FOR HAITI





I've watched Anderson Cooper give his heart and soul as he  reported the devastation of Haiti. Dr. Mark Hyman and Dr. Sanjay Gupta operating and treating people in parks and in hospitals without the benefit of even the most basic medical supplies.

The telethon was wonderful. I think John Legend and Christina Aguilera were so touching. All of the music was beautiful.

If we even give one dollar this can help this desperate country.

DONATE

Thursday, January 21, 2010

SOMETHING NEW










Zanaflex.


I went to a new pain management doctor that was recommended by my orthopedic surgeon. I'll be getting epidural injections and I'm also still waiting for the MRI results. 


He asked about my history and I mentioned the Fibromyalgia. He then prescribed Zanaflex. He said it would not only relieve the cramping in my muscles but it would help me sleep. 


What am I taking?


Zanaflex is a short-acting muscle relaxer that addresses the problems of muscle spasms. It's been effective in relieving the muscle spasms that accompany either Fibromyalgia and/or spinal injuries. 


Great. I'm two for two.


So now it's a new doctor who is going to aggressively treat the pain that is constant in my body. I had a concern about all the medication but when he explained it, it makes sense. My body needs help to repair itself. 


So I'll try it. 


At least someone is trying something.


Has anyone had any experience with Zanaflex?


Wednesday, January 20, 2010

RAIN, RAIN GO AWAY. MRI ANOTHER DAY






It's amazing that a beautiful and much needed rain can wreak so much havoc on my system but that will be the story of my life; at least this week. With that said......what else can be as bad as the pain that comes with the rain?


What you ask?? 


Just a quick MRI and nerve conduction test. 




Helga's House of Pain


It shouldn't be too major, just a  few simple electrodes placed strategically on my legs and feet. A couple of stabs and .......voila! I'm done. 


I swear the woman that tested me today not only worked there but was the manager.


No. Such. Luck.


First, it's advisable to keep me waiting over an hour. I love that. Then I have this dominatrix taking off the first three layers of skin trying to get the electrodes on my head and legs. Once applied I'm gently asked to get my already sore body on an ice cold table. Then Helga the terrible says, "Ready?"  and before I could say, "HELL NO!" she shot an electrical current that could keep New York lit for a week through my legs. 


As I'm flopping like a fish just out of water on the table, she zaps me again! I raised my head and glared at her and asked if she could wait a few seconds. She looked at me again and started in with a SERIES OF 8.  


At that point I figured it was time to take some action. I grabbed her hand and said STOP and if she didn't warn me before the next series I wanted someone else to do the testing. I looked down at my legs and I have lovely little blue marks where she burned me from the current.  


What a wonderful day.


So I proceed to the cigar tube for an MRI. This isn't bad because I'm not claustrophobic. At least I got to rest but I had to wait because my legs still had spasms from all the electrical currents playing with my nerve endings. 


When I finally got out of there I realized the pain in my body wasn't that bad after all.


At least Helga wasn't giving me a massage.




Monday, January 18, 2010

GLOOMY AND SAD








It's coming.


Rain.


It's supposed to rain all week and I know that while the clouds are a beautiful thing, it isn't a beautiful thing for my body.


My hands already hurt and it's getting worse.


I've watched the clouds and the gentle rain coming down through my window and I can't even think of the beauty. All I can think is how much I hurt.


Is there a silver lining?


In the "Art of War" by Sun Tzu one of the principles is to know your enemy and know yourself. I'm beginning to think of this as the enemy.


So I need to know myself and know Fibromyalgia and only then can I prevail.


Right now I want to curl up. It's hard to find hope in the middle of pain.


Am I the only one that feels that way?



I'm not doing well with any coping mechanisms right now and the only thing I want is to bury my face in a quart of Haagen Daz but I know I'll hate myself afterwards. I've tried finding my zen place but my zen place is ice cream....no that's not what I mean. I'm not real disciplined, but I guess it doesn't take a rocket scientist to figure that one out. 


I mean....................... 4 or 5 of those little things make a nice snack.




Sunday, January 17, 2010

LDN INFO



GOT A GREAT LINK!
THANKS FOR THE COMMENTS!




MORE LDN INFO

Saturday, January 16, 2010

ALERT!! MASSIVE RECALL OF PRODUCTS!!







CHECK THE PRODUCTS IN YOUR MEDICINE CABINET!!



MASSIVE RECALL OF PRODUCTS
















I've posted the link......go there for more product information!

Friday, January 15, 2010

NIGHTSHADE? LOW DOSE NALTREXONE?





Low dose Naltrexone


Would it work?


It's thought that the central nervous system is compromised in people with Fibromyalgia and Chronic Fatigue. Naltrexone is an anti-addiction drug in normal circumstances but in low doses it acts differently.


Stanford is preparing for a study of Low Dose Naltrexone as a treatment for Fibromyalgia and Chronic Fatigue. This is the first study of it's kind but this drug has been prescribed off label for the past few years.


It isn't a cure-all and not without side effects. 


Some of them are:


dizziness
headache
fainting
anxiety
nervousness
insomnia 
fatigue
nausea & vomiting
diarreha
joint pain
excessive muscle contraction
sore throat


Now, look at that list. I'm a little confused. If those are the side effects how would they know if it's working? A lot of those are the same symptoms that we feel with Fibromyalgia.  I know, in the Stanford study, that the side effects are rare and short-lived but there are people that will be on either side of the "average." Given my tolerance of medication I'll just bet I'd be one of those people.











Are the side effects worth it?


I have a hard time with drugs. Not to say that I don't use them to stay out of pain but the opiods are solid. The relief is there and the side effects are minimal. It's the drugs that make you weigh them on the balance bar to see if the side effects outweigh the benefits.


It's like Lyrica. Given the litany of side effects that there are who in the hell would put that in their mouths? I know everyones different. I guess that is a different view of the balance scale. For me, no fricking way. I think it's the weight gain that did it for me. I have enough self esteem issues without more weight gain. I've put on 20 pounds and I'm one of those all or nothing women. If I'm not a 10 I must be a zero and I don't need Lyrica to help that issue along.









A more natural road.


Then theres the whole nightshade issue. When I first heard about it I thought it was a new kind of curtain. I didn't have a clue that there were foods classified as nightshades.


Nightshades are a family of foods that include tomato, potato, eggplant, tomatillos and peppers as well as spices like paprika, cayenne pepper and tabasco sauce.


Nightshades contain a toxin that in normal conditions bodies process very well but given the compromised system in Fibromyalgia it is thought that by removing these from your diet it will help with your pain. These vegetables contain high levels of alkaloids that remove calcium from the bones.


Now I haven't seen ANY studies on this so I'm not sure if it's just a reach but I do know that certain foods affect people in different ways.  I can't be sure that it's not a food allergy. 


Part of me wants a dietary fix and the other part doesn't think that a nutritional avenue is the only way to go.


What to do? 


I'd love comments to hear what people feel about these two treatments.










Thursday, January 14, 2010

HURT LIKE HELL




TODAY IS A REAL BAD DAY.


I don't think there's a place on my body that isn't in pain today. I need another MRI and nerve conduction test next week. Between my back and the Fibro I think I just want to get in a hot bath and forget who I am.


The only silver lining about being laid off is that if I had to see people today I don't know what I'd do. To get up and smile and pretend everything is fine is more than I'm capable of today.


OW.


Tears.


OW.

WHAT NOT TO SAY







People should know that we aren't faking it. 


This isn't a disease that an aspirin and a nap will fix.


So in the interest of those with Fibromyalgia and/or Chronic Fatigue, I offer these suggestions.


Please do not say:


1. You don't look sick.
No, I don't look sick. If I looked like I felt I'd scare dogs and little children but thanks for telling me that I should look sick if I want to be taken seriously.


2. You should exercise more - you'd feel better.
I guess it would be o.k. if I fell asleep on the treadmill. I especially like it the next day when I can't move any part of my body due to the pain of the glorious exercise I did the day before.


3. Everybody gets tired.
Yes, everyone does get tired. Again, thanks for reminding me that you and a lot of the medical community thinks we're crazy. Just for a point of information when we rest, we don't wake up refreshed.


4. You just need to have a better attitude.
Gee, I thought I did have a good attitude. If my attitude reflected the pain it might kill you.


5. It can't be that bad.
In the same vein no, it can't be that bad. I'll just take a baseball bat and beat the crap out of you and see how you feel the next day. Live like that for years and then tell me it can't be that bad.


6. I wish I had time to take a nap too.
Yep, I'm just a whining little princess who naps and eats bon-bon's all day and pretends to be sick.


7. If you'd just get out more.
I love being locked in my ivory tower. I definitely should get out more. That makes me feel SO much better now.


8. You're just depressed.
Well, what tipped you off to that one? If you live with chronic pain and fatigue don't you think you might get a tad depressed?


9. Oh come on, just get tough.
If you only knew how tough we really are to function and deal with this illness.


and my favorite...................


10. It's all in your head.
People have had enough of the medical community making us think we're crazy. We have to go from doctor to doctor until someone believes us when we say we're sick. We've put up with so many people thinking we're either whiners or neurotics  please don't add insult to injury.


Thanks for listening.

Wednesday, January 13, 2010

I JUST HAVE TO GET REALITY OFF MY CHEST


I love American Idol. 


I started watching it as one of my "can't miss" tv shows  in season 7 when I saw David Cook sing Hello by Lionel Richie. I had watched it a little bit before but usually right at the end to see who won. 





Then we got to Season 8. I liked Kris Allen. I thought he was great but the showman was Adam Lambert. What a talent!





Now here we are. Paula's gone and Simon's leaving. I know that TV moves on but American Idol was not just about the talent. I enjoyed seeing Paula get goofy and I respect Simon's sometimes harsh words.


So tonight "the girls" found some good in almost everyone, Randy Jackson was almost non-existent and Simon was subdued. 


I hope it get's better.


Too bad..........it used to work.


Now let's go to The Bachelor.





Jake.


I'll admit he's hot and he seems like a really nice guy. 


But who are these women?







I mean, who cries after the first date? Who is delusional enough to talk about MARRIAGE and CHILDREN before they've even met the guy? I don't understand that at all. They act like they are emotionally scarred from this experience. Very weird.


Then there are the REALLY spooky ones that look like they're one step away from a padded cell. If they're losing it before the season really gets underway what's going to happen when the cat fight really starts?


Well, let the games begin. It should be a real interesting season for reality TV.


I just want to see Pawn Stars. 







I want to see Million Dollar Listing.




I want to see Tabatha's Salon Makeover.








Geez,  I need a life.

Sunday, January 10, 2010

MORE TYPE A






We're driven.


We're work-obsessed.


We're competitive.


Yeah? So what. It's going to wreak havoc on our bodies.


I am a time freak. I can break down the time I need to the minute to put on makeup and I have a real sense of how quickly it can pass.

I have high standards for myself and am extremely self-critical when I fail to reach the impossible. 

I don't show emotions because they can be interpreted as a sign of weakness and I hate to appear weak. The only people that see the "real" me are my closest family and friends.

It isn't that work is more important than relationships but one must be very responsible and sometimes that responsibility takes more hours than a normal workday.

It's not that I love money but it does represent security. Why I can't seem to save any must be an aberration of my personality type.

I am decisive in my work decisions but not so much in my personal life. 

I'm self-motivated.

I don't like unfairness and injustice in the workplace. It tends to make me come unglued. Unfortunately when that happens my mouth goes into hyperdrive and I don't care if it's the CEO I will tell them they're wrong.

I don't like sing-songy little people that go with the flow and wouldn't know stress if it jumped up and bit them. They are the people that drive too slow, take too long at the bank and wait until their groceries are totally rung up and then forget they have to pay. They take their time about EVERYTHING and just to get a full sentence out of their mouth makes you want to slap them silly.

Did I just give myself away?

Am I type A?

I've been told that more than once. 

More than once.







Saturday, January 9, 2010

THE BRAIN, STRESS AND TYPE A...........OH MY!








Evidently, scientists are finding out that exposure to chronic stress affects, and can damage,  the hippocampus region of the brain. The researchers are also exploring the role of the hippocampus in regards to pain perception in people that have Fibromyalgia.

Flight or fight.

When your body perceives a threat the nervous system responds by sending hormones into the body.  These hormones put your body on alert. Muscles tighten, the heart beats faster, all your senses become sharper, blood pressure rises and you breathe a little faster. It is your bodies way of protecting you. It can help you rise to challenges and can keep you alert. It puts you in survival mode. 

Chronic stress is different from the "flight or fight" syndrome that the body produces when it experiences acute stress. Chronic stress can change the way the body functions because the body feels like it is constantly under stress. Stress hormones are released into the body at an unprecedented rate. For example, the heart is more susceptible to disease when an excessive amount of cortisol and adrenaline are released into the body. Brain function is also thought to be compromised and learning and memory can be affected. The immune system suffering under an onslaught of these hormones is suppressed. It's overworked and then does not respond well. You are at risk to fight off diseases and when you do get sick it's harder to recover from illness.

What happens when the body is under stress?

Cortisol is produced in the adrenal cortex is the adrenal gland. It regulates blood pressure. It regulates glucose metabolism, immune function and inflammatory response. In small amounts it can heighten memory functions, lower your sensitivity to pain, helps maintain homeostasis (internal equilibrium)  in the body and can give you a quick burst of energy. To turn it off, however, the body must switch on the relaxation response. If you don't switch it off, i.e. relax, the body doesn't have an opportunity to return to normal.

When the stress that you're under is greater than your body is able to tolerate, you are at risk of a stress related disorder.

The body doesn't differentiate between physical or emotional stress. Stress is stress. When you keep yourself in stress mode the body has a harder time shutting off the switch. When you think you thrive on stress and get the high from the stress that ultra Type A personality puts itself under; think again. 

If long term stress can rewire the brain, I must be severely rewired. Stress can creep up on you and before you know it our old friend stress feels warm and fuzzy. It feels normal and very familiar. You get used to it. It's sneaky. The price you pay for that familiar, over-achieving, perfectionistic feeling is a heavy toll on your body. 

What kind of toll?

The negative effects can impair your memory, lower the function of your thyroid, give you blood sugar issues, decrease in bone density and muscle tissue. It disables your immune system so you can possibly have a big bulls-eye on your back for germs in the environment. 

You don't sleep right, you don't eat right, you don't relax right and you think you're cruising through life: until................

The Domino Trips



Insomnia, anxiety, depression, illnesses, circulation problems, heart problems and sometimes autoimmune illness or worse.

Each of these illness has its own problems and when put all together you're on a merry-go-round that is real difficult to get off. Make no mistake. Stress can kill.

Put this together will a central nervous system dysfunction that researchers are finding in Fibromyalgia patients and you have a recipe for disaster.

I always loved high stress positions.

I loved being a Type A to the max. 

I thought I was invincible.

I was wrong.




Fibro Pain linked to Central Nervous System Dysfunction