Monday, August 31, 2009

Social Security Crisis due to fakers

Normally I wouldn't post again right away because my hands just can't take it, but right now I am fired up, ticked off, and know I am going to suffer later but it may be worth it just this once.......
I found this article on, a news media website, where anyone can post "news" articles. And, yes most of it is news or informative. BUT this person .... ok just read...

"The disability cheaters use this loophole with preferred "conditions'
that come under the description of 'Chronic Fatigue syndrome',
Fibromyalgia syndrome, 'mental blackouts' and even being "morbidly
obese". All of which supposedly make it impossible for you to sustain
a full time employment in a typical workplace enviroment.
Fibromyalgia is muscle pain and discomfort that affects about
half the population over fifty years old. Its mainly due to abuse
of certain movements, lack of total physical fitness exercise, and general
lack of adequate diet and lifestyle maintenance. Another more truthful
term for it is Laziness. The treatment for this, if you really have it
severely enough to where you are constantly grunting and groaning, and
taking pain killers, and complaining and sitting down a lot, is to simply get a life and off your lazy ass and start getting back in physical shape!
But the scammers who use the Fibromyalgia trick simply stay out of
shape intentionally because then your muscles do get 'sore' and atrophy, due to lack of circulation and exercise, so your 'act' is based on some actual basis. Fibromyalgia is a popular disability excuse because it is hard, if not impossible to prove you't don't have it because it exists naturally if you don't take care of yourself.

Thats why this would be an easy disability to eliminate and disqualify
for social security because it is so treatable and curable even if you really do have it."

This is my very nice, polite response (not all the four letter words I wanted to use)...

Obviously you do not know anyone who really has fibromyalgia. I have had fibromyalgia since I was a child. Granted, I was fortunate enough to be able to be active, work full time while working on my masters degree and even have an active social life. However, this is not the case for everyone and the people that I have known who have had the hardest time with fibromylagia are NOT overweight, are actually thin, women AND men. Unfortunately for me my life became complicated with peripheral neuropathy and I can no longer work, but trust me, I had a job I loved with a company that I loved, and a future that looked bright. If you knew the pain of just the thin people I know who have fibromyalgia for just one day you would know why they are "lazy". It's not a choice of being lazy. It's a fact of for me, I used to be able to do 20 laps in a pool to now not being able to move for 3 days after 2 laps. It's a matter of feeling like your body is one giant bruise, you do not want to be touched. I hope you never have a bad car accident and wake up stiff and unable to move the next day, again feeling like one giant bruise, and exhausted because then you will know what these people feel like.
I have one last thing to add that I didn't say... since when is fibromyalgia so easily treatable or curable?? Please let me know so I can share this information with the friends I have who would like to be cured so they can get back to their "normal" lives.

Sunday, August 30, 2009

Life In the REAL World

The other night my normally very supportive husband said to me (on the phone) "I don't understand how you can be on the computer ALL day at home, but not at a job". Now this made me angry, but I do understand he gets frustrated too being the sole supporter while I sit home all day and do nothing. BUT I am not exactly on the computer all day in the same manner. This blog right here is the most I type. Oh, I may send 2 tweets a day or update my facebook status, maybe once a day, but a tweet can only be 140 characters, or about one to two rows of writing in this blog. I usually have my mouse with me, but not the keyboard, I hit refresh a lot on twitter, I like reading what people are writing on twitter, especially the characters from True Blood are on Twitter, and it's hilarious. Also, I think my favorite person to follow is shitmydadsays, if you haven't read his stuff, you've got to check him out. It's a 28 year old guy who literally types in stuff his 73 year old dad says, and it is so dang funny, it cracks me up!
The computer is my social link to the world. I miss working. I had the best job in the world. I worked for Disney, I made hotel reservations for guests. YES this was the best job in the world. No, not a job you can get rich at, but rich in so many other ways. I could be in the worst mood, had a flat tire, fight with my hubby, whatever, but once I sat at my desk and picked up the phone it didn't matter. Just hearing the excitement in people's voices, whether it be their first trip to Disney or their 50th was motivating and often inspirational.
I left there because of my health. As you know I have fibromyalgia, diabetes, and peripheral neuropathy. The neuropathy was my undoing. At first the doctors gave me a wrong diagnosis of rheumatoid arthritis. Mistaken only because the neuropathy was so prevalent in my hands versus starting in my feet, but then again, I did type 8-10 hours a day. The neuropathy got to the point where I would drive the 45 minutes to work, sit down at my desk, take my first call and the pains would start. Sharp stabbing pains, electric shock type pains. hands and fingers swollen. This is when I stopped working. It took the doctors another 6 months before they correctly diagnosed peripheral neuropathy. The doctor upped my gabapentin to 1800 mg a day, and sent me for occupational therapy. The first night after occupational therapy I wanted to have my hands cut off. I cried all night. The next time I went I asked the therapist to slow it down and he was shocked because he thought he had started extremely slow Needless to say the moist heating pad and hand massage felt good, but if I had to pick another pin up and stick it in a peg I probably would have brained someone good with those damn pins! That was when I let Disney know I wasn't coming back. I spent the next 4 months trying to find a job I could do that did not involve standing or walking, due to the neuropathy in my feet and degenerative disc disease in my lower back, or didn't require much to do with my hands, especially not typing. This was when I applied for disability. I'm still looking, so if you know of a job that doesn't require me to stand, walk, or use my hands, (and I can't get arrested for) let me know, I miss life in the real world.

Friday, August 21, 2009

Help, I Need My Meds!!!

So I was laying in bed (yes, again, this is where these things start, when I am left alone with my thoughts, scary, I know!) with my hands and feet hurting and burning. The burning feels like I am holding my hands over a lit candle. Anyways, I digress already.....
I was thinking of our health insurance. First of all, I realize healthcare is a hot topic right now with Obama. And, of course I haven't been paying any attention so I am not up to speed therefore this is not what I am talking about here. What I do want to talk about is what do you do, how do you pay for, your medication when you have no insurance, or prescription plan.
First of all, most pharmacies now have their own prescription plan. I know our local Sweetbay has one that was, I believe,  $7 for the year. There are 400 medications on the list that cost only $4 for a 30 day supply and only $10 for a 90 day supply, and they even have some free antibiotics. This plan covers 2 of my most important medications, the generic for synthroid (as I have no thyroid) and metformin (for my diabetes), so it's a start. However, I am still without gabapentin and cymbalta, probably my next 2 most important prescriptions.
My next step was to go directly to the drug companies. A good share of drug companies have programs for the less fortunate folks who fall below the poverty line. Cymbalta is made by a company called Lilly USA. You can apply with them at Print out the application and take it to your Doctor. This is the stage I am at now. Pfizer has several different programs. You can find a list at
I found both my gabapentin (neurontin) and xanax there. The program I am eligible for is Connection to Care. Again it is the same as the Lilly program. Print the application and have your doctor fill it out. Most of these programs also require proof of income, like a copy of last year's taxes. Right now I am at the stage of waiting for my doctor to fill out the paperwork. Hopefully it will be ready tomorrow. I will keep you informed of my status.
I did receive a coupon for 15 free cymbalta from the Lilly cares website, and some samples from my doctor.
Next will be to see if there is any help for my pain meds, tramadol and vicodin. But, they are the least important right now. There may still be some reform with this weird "limited" health insurance plan from my husband's new company. It just seems wrong to pay $85 a week for a "limited" plan that doesn't cover prescriptions.
More to come on this topic!

Monday, August 17, 2009

What Causes Fibromyalgia?

Lying in bed tonight, unable to sleep due to pain, I began thinking about what causes fibromyalgia. There, of course, have been tons of articles and opinions on this subject, so I won't rehash all those. Instead, I will tell you what I have experienced and witnessed. There are 2 different theories here, the born with it, and the trauma induced. For me, I believe I've always had fibromyalgia. I remember being a child and having horrible "growing pains". As I grew older, I didn't grow out of these pains. Even when I was in my early twenties, I had these pains, and the doctor still said they were "growing pains". Seriously, what 22 year old has growing pains (unless the growing pains come from the growing outward from the freshman 40!)? As I've gotten older these pains spread.

My cousin is from the other side of the theory. She didn't have the "growing pains". For her, the fibromyalgia came with the trauma from a car accident. The question for me is, was it latent? lying there in wait for a trauma to be triggered?

Here is something from the Mayo Clinic website regarding the causes of fibromyalgia:

Doctors don't know what causes fibromyalgia, but it most likely involves a variety of factors working together. These may include:

Genetics. Because fibromyalgia tends to run in families, there may be certain genetic mutations that may make you more susceptible to developing the disorder.
Infections. Some illnesses appear to trigger or aggravate fibromyalgia.
Physical or emotional trauma. Post-traumatic stress disorder has been linked to fibromyalgia.

What side of the fence are you on? email me at

Saturday, August 15, 2009

Banana Nut Muffins with Splenda recipe

These are soooo good! I made some in my mini muffin pan, and made some "powdered sugar" to top them off. They were good little poppers, but addictive. I also made them in my jumbo muffin tin topped off with extra walnuts... also addictive!! (p.s. thank you sweetie for helping)

Banana Nut Muffins with Splenda
*preheat oven to 375 degrees

1/2 cup margarine, softened
1 cup splenda
1/4 c brown sugar
2 large eggs
1 tsp vanilla
1/2 cup milk
2 cups self rising flour
3 overripe bananas, mashed
1/2 - 3/4 c walnuts

Cream margarine with mixer, add splenda and brown sugar, mix well again. Add 2 eggs, vanilla, milk, and bananas and mix well again. Gradually add all the flour while mixing. Stir in nuts (I reserved some for the top, that's up to you).

Baking time varies by size of muffin. Mini muffins 15-20 minutes. Regular muffins 20-30 mins, and jumbo muffins 30-40 minutes.

TIP.... when you take them out of the oven, leave the muffins in the pan for about 20-30 minutes. They need time to rest and finish cooking.

The Importance of a Good Support System

If you live with fibromyalgia, neuropathy, CFS, MPS, or another "invisible pain illness" there is no doubt you may come across naysayers, negative Nancy's, friends and family who in the least don't understand what you are going through, in the worst... don't believe you. Let's face the truth, it's easier to empathize with illnesses you can see or even are more prevalent, like cancer, heart attack, or stroke. has an excellent "letter to normals" that I believe should be a must read for everyone, especially those who deal with fibromites in their family, friends, and even coworkers.
When I worked for a certain, now bought out, aircraft parts manufacturer, in sales, I sold 1 million dollars a year more than the next closest sales rep. But, all my boss could see was I had more sick days than anyone else. My last job was at the Disney Reservation center where I had an excellent, extremely understanding boss (he had gout so he sympathized!) who knew how hard it was for me to leave my job there, I loved it so.
So, if you don't have support at home, work, or in your circle, what should you do? An excellent question. I found an amazing support group online. Soulten's fibro support is my favorite.
This group of people are not only my online support group. They are my online family. Most of these people I met in the fibromyalgia chat room on They do not all have fibro, some have depression, are bipolar, or have neuropathy like me. They are from all over the world, and I don't think I would have made it through the past year without having their support.
One of the hardest things I had to learn was to kick the negative Nancy's to the curb. I cleaned house of the people who refused to believe my illness is not "all in my head". As hard as cleaing my life of these people were, and in some cases they were really long term friendships, I had to. No one should have to prove they are ill. You wouldn't ask a cancer patient to see their chemo treatment for proof would you?
I want to thank my support system. I have the most amazing husband who works 50-60 hours a week, takes care of me and our home too. Sweetie, you are my rock and I love you. To my best friends who I am realizing worry way too much about me and are always there to lend help, even from an hour away! And, lastly to my friend, neighbor, and sister Nan. Somedays I don't know what I'd do without you. You will never know how much the simple act of unloading and reloading my dishwasher means to me... and for that and all the other things you do for me (including picking up my prescriptions in the pouring rain) I love you (and u are NOT a negative Nancy!).

Friday, August 14, 2009

EXCELLENT Fibromyalgia & Disability blog

this is from a Disability lawyer's blog, and is some excellent advice. Thank you!

Fibromyalgia and Social Security Disability

A number of our Social Security Disability clients suffer from fibromyalgia. Individuals suffering from this disorder frequently experience the following symptoms:
∙ dull muscular pain,∙ multiple tender points (e.g., between shoulder blades, upper chest, etc.), and∙ fatigue or disturbed sleep.
The course of prescribed treatment can include medications which may include analgesics for pain and stiffness, antidepressants to promote sleep, physical therapy, and counseling. While not all individuals who have been diagnosed with fibromyalgia will be found disabled under Social Security rules, one source of information for people with fibromyalgia that we recommend is Fibromyalgia Professional Resource Center. This is a non-profit wefull of information and resources to those suffering from fibromyalgia.
Recently we assisted numerous individuals with severe fibromyalgia in getting Social Security Disability and Supplemental Security Income. Their cases were among the more severe of those suffering with the disease, and each had other co-existing conditions such as lupus and depression. The frequency and severity of an individual's symptoms are unique in each case and will determine, to a large degree, whether an individual claim will be granted benefits.
Some diseases are included in Social Security’s Listing of impairments, but fibromyalgia is not included on the list. In some instances, a disease, while not Listed, is addressed in a Social Security Ruling. The Rulings offer guidance but do not set out specific criteria for an award of benefits. Other diseases are not in the Listings or recognized in a Social Security Ruling.
Regardless of the disease, you or your lawyer should have the following:
∙ a good working list of your symptoms,∙ a knowledge of the degree of certainty of your diagnosis,∙ a general understanding of the consistency between your symptoms and your diagnosis,∙ a good understanding of what evidence might best support your contention that your symptoms are disabling, and∙ which legal theory will most likely be accepted by the Social Security Administration given the particular facts of the entire case.
If you, or someone you know, is suffering from severe fibromyalgia with dull muscular pain and multiple tender points, consider visiting the Fibromyalgia Professional Resource Center for additional information on the disorder. If you are considering a Social Security Disability claim, we advise you to speak with an attorney. We handle cases throughout the state of Texas, but we are always happy to give you a referral if we are unable to assist you.
Posted by Bob Kraft on August 13, 2009 at 10:55 PM in

Thursday, August 13, 2009

been a while... time to rant and rave!!

Sorry it's been so long guys!! Hubby started his new job about a month ago and that is going fine, he likes it BUT what kind of job do you have to wait a year for health insurance?? And, they charge $85 a week for this limited insurance plan that I don't understand at all. From what I've been told it's called Key Benefits Administrators. The paperwork I have gotten shows they pay $90 towards whatever your doctor charges, only 6 visits a year, and no real prescription plan. I did manage to sign up for the plan at the grocery store pharmacy so I can get my metformin and synthroid for only $10 each.... 90 day supply. I have paperwork to fill out with a few different drug companies... one to get cymbalta for free and the other to get neurontin and xanax for free also. I have been out of all my meds except my synthroid, and xanaflex and I feel like I am slowly and painfully dying.
One of my best friend's husbands found out a few months ago he is type 2 diabetic. He has been very good about checking his blood sugar, taking his metformin, and his diet. Except the diet part now. My bff is so worried about him because he acts like now that his blood sugar being medicated and "under control" he can eat what ever he wants. THIS IS SO NOT TRUE!! I know because I did the same exact thing. Now I have this burning, painful neuropathy. Neuropathy is caused by the low and high spikes. So let's say my BFF#2's husband sneaks out for the new McDonald's angus burger and fries after she goes to bed, this is going to cause your blood sugar to spike high, then spike low. My friend works a job that requires only good manual dexterity. What's going to happen when the neuropathy in your legs becomes in your hands? And they are swollen and painful all the time and you can't do that anymore??? Please please learn something from my mistakes!! I would call and yell at him myself, but I'm afraid he'd just yell at his wife. She's worried, we've been best friends for a long time and she has seen me go from being incredibly active to housebound in a matter of 2 years, she doesn't want the same for him.