Sunday, December 18, 2011

*ALERT* Great Website (Including Info On Filing For Disability)


After reading over much of the material, it's clear that documentation is KEY. You have to read it for yourself to see what I mean. That may be helpful to you to consider purchasing the Fibromyalgia Pain Management and Symptom Tracker I have listed for you. It's link is over on the right hand side of the blog along with more information.


Example pictures of actual journal pages:

Saturday, December 3, 2011

Silent Cry From A Reader - POWERFUL

Hello Everyone,

I received this comment the other day and it was so powerful and raw that I decided to go ahead and make it a regular post. This precious reader is expressing things that I know I'VE felt and gone through time and time again and I know others of my friends who are PWF's (persons with fibromyalgia) have gone through as well. PLEASE READ THESE WORDS AND REMEMBER THEM. ESPECIALLY if you are NOT a PWF. Remember what we go through, love us enough to remember. We are not faking, pretending, sure of why we go through this, do not have an answer as to why our bodies react this way, and would do ANYTHING ALMOST not to have it.  Fibromyalgia, Allodynia, and Chronic Fatigue Syndrome SUCK! Please help us not have it suck so much by NOT forgetting that what we have is REAL, 100% 24/7, AND CHANGES EVERY DAY (sometimes within hours or even an hour!).

And finally, to my precious reader who wrote to me:  You are not alone dear friend and I appreciate SO MUCH that you took the time to write me and share what is happening. I've thought of you many times since and will continue to lift you in prayer along with my other readers and PWF's around the world. (That's a promise, not just words.... and I never use the "P-word" unless I can keep it. )  P.S. You are not exaggerating... many of us have exactly the same things happening to us too.  (((((HUG)))))

Your friend,

Comment sent in:

"I just wish I would not have to be reminding my family constantly of how I feel, because they forget, they ask things of me that it is difficult to do and I have to remind them that I can't because if I simply say I can't they always ask, why? There are times that I just do it and in the mean time I want to burst into tears because nobody can understand why and I going through, and God forbid I have a good day and want to do something fun or something that I will not be able to do any time soon because of my condition and then I get the " don't complain later of your pains" I feel so alone sometimes, I also feel that maybe I exaggerate or that maybe I will be better off alone not bringing anybody down because of how I feel. I am not depressed and I will not allow myself to get depress, is just very sad and wanted to be able to share that. "

By Anonymous on What Does Fibromyalgia Feel Like? on 12/1/11

Tuesday, October 11, 2011

Venting About Fibromyalgia Awareness!

Hello friends,
*WARNING* I'm gonna VENT! And before anyone writes me... NO I'm not downplaying breast cancer or it's seriousness. My grandmother died a horrible death due to breast cancer and it's something I don't take lightly.  However, for the purposes of this particular post, I'm using the difference between the recognition and money breast cancer awareness and research gets verses fibromyalgia recognition and research.

On with the post: Oh! and just for you 'n me, I've put a new playlist on the blog of some of my fav songs if you want to listen while reading. Enjoy friends :-)

Ok, NOW..on with the post:
I want Fibromyalgia to receive as MUCH attention and awareness as breast cancer or autism or freak'in ED for crying out loud!!!! I am SO TIRED of much of the medical community not even recognizing Fibro as a legitimate disease or condition much less the public at large. Yes, yes Lyrica commercials have started the process of more recognition and information, but please.... if we could garner the same support as the breast cancer people.. WOW! what a difference we could potentially make!

Side Note: I just have to say .... if after ALL THESE YEARS and millions (if not billions) of dollars going to breast cancer research they STILL have not found any cure I have to wonder... do the powers that be really want a cure? Seems like alot of bucks and no results.  The meds would after all, be discontinued and all the partnerships potentially right? I'm just say'in. What's the real deal? These women deserve better!

Ok back to Fibro.

Guys, I was browsing a website the other day and the topic was injections for say the flu and what not. A girl posted about how after taking a popular injection against HPV she ended up with Fibro at 25 years of age. Now the post was a vent and she was quite upset, but what she had to say had some weight to it. The thing that just IRKED me to no end was the comments she received. I kid you not, one comment was about how "Fibromyalgia is nothing but lazy fat persons disease so they can stay high on narcotics all day and collect $1000.00 a month from the government" and another was how it was a "fantasy that can't be proven so doctors just call it Fibromyalgia when they can't figure out what's wrong".  WHAT???!!!!! (And just so you out there know.... the likelihood of anyone receiving disability checks for Fibro is slim to none. You have to prove you have other illnesses caused by or in conjunction with Fibro (such as RA or heart problems etc...) to even be considered for disability. DO THE RESEARCH BEFORE MAKING REMARKS LIKE THAT. Here...go to Allsup  for starters. They at least give PWF's a fighting chance.)

I'm thinking I want to somehow organize a fundraiser walk, or a rally for people to come and raise awareness and combat some of these long held mental strongholds in the community about something that is very real, very destructive, and needs more attention. I dream of having the media ask US questions for a change and do stories on our situation. I want freak'in purple ribbons to be just as recognizable as the pink ones. Over 6 MILLION of us and counting in this country alone suffer every day with no real hope for any legitimacy on the medical front any time soon. For crying out loud we AT LEAST need a legitimate way to TEST our tissue or blood for Fibro somehow! AT THE VERY LEAST!.  This has gone on farrrrrrrrr toooooo long.

I just needed a space to write down what I'm thinking and feeling today. It's been boiling inside for the last year or so and I needed to vent it.  Also.... I think writing things down sort of cements ideas. I think I'm seriously going to look into finding a way to organize a rally and/or a fundraiser walk somehow.  I'll keep you posted.

In other news: 

On my last post about weight gain I was pretty hopeful about some ways to combat the problem. Upon doing some more research you know what I found???? Much to my dismay.... there are lots, and lots of people taking Lyrica and gaining some serious weight because of it. I know I've gained 35 pounds in 4 years since being on it. Un...real. I've NEVER put on weight like this before nor had such a heck and tarnation time of trying to get it off! Look at just this one forum alone at Medical News Today. I was blown away! But, I finally had some answers about just what the heck my body's going through and why. It took some of the guilt and shame away for me.

I determined to try an experiment. (DO NOT TRY THIS WITHOUT CONSULTING YOUR DOCTOR).  I took my Lyrica capsules and dumped out 1/2 to 3/4 of the medicine so that my dosage was down from 150mg to 50mg so I could start getting some of this weight under control. I dropped about 5 pounds in the first couple of days (no change to my eating patterns) but the pain was excruciating and I was down for the count the whole time. Part of it was the reduction in the amount of medicine and part of it was withdrawl symptoms. Oh yay..lots of fun. Finally after about a week and a half I went to my husband and was crying. I said "I'm darned if I do and darned if I don't." "If I reduce or stop my medication the pain is excruciating and I'm almost bed ridden, If I keep taking it, I gain weight like crazy and I can't risk the other problems that will come with that" I was soooo frustrated. He was great about it though. He hugged me and told me to take my regular dosage of Lyrica and have some functionality and we'd find a way to fight the weight somehow with more exercises, maybe going all vegitarian, or a different medication or something. For right now until my next Dr. appointment that's what I'm planning to do.

Well friends, that's it for today. Just some random thoughts and ideas. Thank you for your patience and for listening.  Remember.... You are NOT alone.

Here's to YOU, Here's to US,

Friday, September 2, 2011

Fibromyalgia and Weight Gain

Hello Everyone,

It's been a little while since I've written. Thank you for your emails and comments!

I want to tackle a subject that personally makes me G-R-O-A-N and sigh, and roll my eyes (mainly because it has affected me greatly). It's the matter of weight gain for PWF's, how it effects us, and what we need to do to manage it.

I personally am battling this situation right now. It stares me in the face each time I look in the mirror. The shock, horror, and overwhelming sadness I feel about it is something I've only told a couple of my closest family members about. I find it completely humiliating and consuming. I know there are those of you out there who totally relate to what I'm saying.

I know the right answer is that I should show myself some grace and mercy. The right answer is to realize that between Fibromyalgia, the medications to treat it, and the choice to quit using nicotine a year and a half ago, my body has undergone some radical metabolic changes in the past couple of years. But the truth doesn't matter what the right answer is when I look in the mirror lately. I'm just being honest. I haven't made it to the point where I can see myself and say "Girl.... it's OK. You are more that your outside shell." The truth is.... I don't WANT to get to that point. If I allow myself to, then I know I'll give up and give in to despair that will cause me to binge eat my "comfort foods" and not stop. Anyone out there know what I'm talking about? It's a corner I can't afford to turn.

So after much deliberation, I began to look for a solution to my situation. The good news is that for me the solution is currently working. Each person has to find there own solution, but you HAVE to find one! If you want to fight for your quality of life, then you have to find a way to take back control of your body as much as you can.

I use a specific HCG formula (which I like so much that I became a distributor of it) and rather than the 500 calorie diet, I fluctuate between 500 and 1200 calories per day depending on how hungry I am. I've cut out sugar and substituted Stevia, I eat the foods on the HCG diet protocol, but also added a few veggies of my own ( like peas, green beans etc) and a few more fruits. I use seasonings and very rarely use salt. If I do use salt it's organic sea salt sparingly. I eat only 100-113 grams of protein at a time which consists of chicken, very lean beef, very lean turkey, or talapia. Sometimes I splurge and eat tuna wrapped with tomato inside lettuce leaves. It's soooo good, I love it! I also splurge sometimes and have diet soda or an organic soda made with Stevia. Hubby also found Low Fat Newman's Own Fig Newmans which are a little treat on days I need a little something sweet. Caramel Nut Brownie Luna Bars are also a snack I enjoy that's a great alternative for my chocolate cravings! I decided to let myself have a few splurges now and then in order to keep myself from falling to cravings and feeling too restricted. I'm just not that disciplined in my eating habits .... yet.  : )

Hubby got us a digital scale so we can track our weight loss more accurately. Both of us have lost weight a little at a time. Sometimes .4oz a day and sometimes more. BUT...  a little every day. This week he's down 5 pounds and I'm down 2 pounds. (Women tend to lose slower than men so if you decide to change your eating habits together with a male partner, he will most likely lose a little faster. Don't let that discourage you!)

The other item I HAVE to tell you about is the NuWave Oven! OMGOSH... I LOVE MINE!! Standing for long periods of time is no fun for me (or my pain threshold) so when my husband blessed me with this oven 2 years ago it was so awesome!  I can cook a full meal for my family in MINUTES. I use tin foil to keep the cleaning down to a minimum and presto bango, dinner for us without a lot of hassle!  I can cook fish for Hubby at the same time I'm cooking chicken for myself and the results are the same. Juicy, hot and delicious!
For managing my pain symptoms, the NuWave Oven has been so liberating!! I'm going to have to write the company and let them know!

Now, eating better is not the only ingredient needed to tackle the problem. There is also moving our bodies. I found two great articles to share with you about Fibro and weight gain  and also good exercises that reduce pain and fatigue and keep us from feeling worse. There are a ton of good articles and sites for information if you do a quick web search starting with "Fibromyalgia and Weight Gain".

Personally, I've discovered that the only way out of my mental state regarding my body image is to do something about it as much as I can. I don't want to feel like a victim of yet ANOTHER side effect of this disease. And while I'm at it....... CAN THE ESTABLISHED MEDICAL COMMUNITY PLEASE UNANIMOUSLY AGREE THAT FIBROMYALGIA IS LEGITIMATE AND REAL???????!!!!!  AAAGGGHHHH!!!!! FOR CRYING OUT LOUD!!!!!!  (OK.... I had to vent there for a minute. That's a topic for another post)

Friends, in conclusion.... it looks like weight gain is something you and I may have to deal with on top of everything else that comes with Fibro and CFS. Some of us will gain, some of us will lose but either way, gaining control of your eating habits and choosing to help your body rather than hurt it further is a choice each of us has to make.

Remember.... you are NOT alone.

Many blessings to you today,