Thursday, April 29, 2010

Slow Feet, Quick Feet, Trick Feet, Sick Feet!

Hey, everyone! I hope you are having a better April than my right foot is! Haha! Two weeks ago, to the day, I decided it would be fun to fall off a step ladder, catch my foot in the second step, and completely twist it beyond any typical dislocation. For the last couple of weeks, I decided the best route, without insurance, would be to stay off of it and see if it got any better. Well, it didn't.

I went to see and orthopedic foot and ankle doctor, and thank goodness I didn't actually break anything. EDSers tend to not break bones anyway, but of course, we love to ruin our stretchy connective tissue even more, don't we?! He said I overstretched everything in my foot and ankle, probably tore some ligaments and tendons, as well as nerves by my Achilles tendon and it will be a slow recovery. He recommended a walking boot, but then when he saw that I already had really awesome arch supports and ankle braces, he said that it would save me money and be just as effective to use those instead. I am to walk with a cane and put most of the weight on the cane, until I can stand more pressure on my foot.

I haven't walked on my foot in two weeks, and it sure isn't fun getting my 'footing' (haha!) again! He said it will take a couple of months to heal, if all goes well. I am to just start out slow, only using my foot occasionally, and using my wheelchair and crutches (oh yeah, those are fun for an EDSer! Not really!) the rest of the time. There is certainly a ton of pain, and the annoying part is from the nerve damage - pins and needles all along the back of my ankle and my heel, extending along the arch of my foot. He said this could take a very long time to heal, even longer than the other tissue. We will reassess my foot in a couple of months, unless there is significantly more pain or whatnot, in the meantime. For now, the cane, not a lot of walking, and one day at a time!

The really stinky part of all of it - the next morning I was heading to Portland for a vacation, which I had to cancel. Yuck! And, this will put a damper on some of the things I had planned for the summer. As they say, though, make some darned good lemonade out of these sour lemons, sit back, and enjoy the summer sunshine! I just have to remember that! And take Vicodin as I need it! LOL!


Tuesday, April 27, 2010

Look Toward The Sun!

"Yesterday I dared to struggle. Today I dare to win."
                                              ~Bernadette Devlin

(Thanks to Shellie for turning me on to this quote!)

Monday, April 26, 2010

The Dangers of Soy

 'Bad Soy'

I love Dr. Joseph Mercola. He is a wealth of information on natural health care. He is definitely on the more extreme end of the spectrum and I appreciate the alternative thinking, though I don't follow all of it. But, even for skeptics out there, he has a ton of great information and backs up claims with a solid list of references and studies. Even if you don't follow all of his advice, this is one thing I highly recommend looking into. Something he reported on recently was the dangerous side of SOY. I am a believer that soy is evil! Well, not in all forms. Soy makes up a ton of 'meat alternatives' and processed vegan foods, and of course is a staple of many vegan diets in the form of tofu. Once I eliminated 'bad' processed soy from my diet, I began to feel a lot better.

Even if you just take the basics from his article and do your own research, it is important to stay informed. He does request that you join his mailing list if you want to receive the full article. It isn't necessary if you want to do your own investigating, but it is certainly an easy way to get a copy of his report. Either way, here is the info!



Dr. Mercola's Soy Report


Who hasn't heard of the marvels of soy? The marketing bandwagon has touted soy as the next perfect health food for decades. In fact, its health benefits have been aggressively pushed in advertisements on national TV.
And from 1992 to 2006, soy food sales increased from $300 million to nearly $4 billion! That just goes to show that soy has fast become synonymous with healthy eating.

But could something that sounds so healthy be actually dangerous? Before you take another bite of tofu and another gulp of flavored soy milk, we believe you should read another side of the soy story. Read the report How to Get the Benefits of Soy Without All the Health Risks.


Asians consume large amounts of soy, that's why they lead long, healthy lives.

The report How to Get the Benefits of Soy Without All the Health Risks tells you that they are consuming far less soy than Americans! In fact a Japanese man consumes about 2 teaspoons of soy in a day, far less than Americans, who guzzle soy milk by the gallons and have substituted meat with processed tofu (so they can feel that they're not missing out). Find out why moderation is actually the key to the Asians' healthy diet.

Modern Soy Foods have the same benefits as Traditionally Fermented Soy.

Most modern soy food from soy milk to soy burgers are processed, which means they contain natural toxins called “antinutrients”. Learn what these antinutrients can do to your health and how much danger they pose. Learn why traditional, fermented soy disposes of these natural toxins to make for “healthy soy”.

Soy formula is safe for infants.

Learn how mega doses of phytoestrogens in soy formulas are putting your infant's normal sexual development at risk. The report How to Get the Benefits of Soy Without All the Health Risks will show you why your infant should be off Soy Formulas! You'd be shocked to know that you are feeding your baby with 5 birth control pills worth of estrogen with soy infant formulas. Just imagine how that much estrogen can mess up your baby's sexual development.


Soy is no laughing matter. Aside from containing antinutrients which are natural toxins, it has a number of alarming compounds that may put your total health in peril.
  • Soy contains goitrogens which lead to depressed thyroid function.
  • It also contains phytates which prevent absorption of life enhancing minerals.
  • It is also loaded with phytoestrogens which sometimes block the hormone estrogen and have adverse effects on human tissues!
These are only a few of soy's hidden dangers. Read the report How to Get the Benefits of Soy Without All the Health Risks and you will be alarmed at how long you have been in the dark!

You will also be shocked that you have actually put yourself in danger of diseases that you had hoped to avoid by eating soy. Read on about a sampling of health effects that non-fermented soy puts you at risk for!
  • Breast Cancer
  • Brain Damage
  • Infant Abnormalities
These are just a few of the alarming health conditions mentioned in the report among many others.


But soy is not the Total Health Enemy it's cut out to be - if it is fermented! Find out what fermented soy products will be better for your health. Learn about Vitamin K2 (the forgotten vitamin) found in these recommended fermented soy products:
  • Tempeh
  • Miso
  • Natto
  • Soy Sauce
 Tempeh 'bacon' over Split Pea Soup - Good Soy!

Find out how Vitamin K2 promotes heart health and gently redirects calcium back to your "bone bank". Discover that K2 is slowly emerging as a key vitamin to fight the signs of aging. Learn how to benefit from "soy" without the health risks that non-fermented soy brings.


You have been unknowing victims of a massive marketing ploy for years. And for purposes of "profit" your health has been put at risk. We are here to inform you on how to keep the dangers of soy away from your family and avoid eating more soy. But bear in mind, though you may become eventually convinced to avoid soy products altogether, you also unwittingly find soy in your meat extenders, even in the oil used to fry your food! Find out how to protect yourself further from the unseen dangers of soy.
  • Learn how to become an adept label reader.
  • The FDA has enforced rules that require food companies to inform consumers about what goes in their food.
  • Know what tips there are to totally avoid non-fermented soy foods.
Read the report How to get the Benefits of Soy Without All the Health Risks and get the low down on Soy!

Click here to get the FREE REPORT. Scroll down and enter your email address.

Sunday, April 25, 2010

Chronic Pain and Torture

A pretty usual sight at my house. 
Heating pads on back, hip and knee. Ice around foot. 
I am quite miserable here, as you can tell from my face. 
A 'normal' night for me.

We deal with horrific chronic pain. Some days we cry simply out of frustration, and some days those tears are shed out of pure, constant, unimaginable pain. We may not be 'victims of torture,' and I would never undermine what tortured persons or animals suffer through; however, this article does a great job of explaining how chronic pain can be likened to torture for the 'victim,' and how important it is to recognize this and work on finding solutions.

I was very impressed by this article. I hope you enjoy it as well.

Much love to you all - and have a low-pain day!

Chronic Pain and Torture
Human Rights Campaign
written by Joe Amon

Human Rights Watch researchers have interviewed thousands of victims of torture. But it may come as a surprise for a lot of people that our interviews with people experiencing severe, chronic pain are very similar to those who have been tortured.

Severe pain undermines quality of life. Pain is known to affect sleep, appetite and social interaction, and to cause anxiety. A World Health Organization study found that people who live with pain are four times as likely as others to suffer from depression.

Like torture victims, patients in severe pain told us that all they had wanted was for the pain to stop. Many torture victims do or say anything they think might stop the torture. Patients with untreated pain told us that they had contemplated suicide, told friends and relatives that they wanted to die, and prayed for death.

A Human Rights Watch report on access to pain treatment includes an advertisement from a Colombian newspaper that read: "Cancer is killing us. Pain is killing me because for several days I have been unable to find injectable morphine in any place. Please Mr. Secretary of Health, do not make us suffer any more."

As this advertisement attests, this suffering that so many endure is treatable, and treating it is also almost entirely in the hands of governments. Morphine is a restricted drug, and governments must estimate the amount they need and request it from the International Narcotics Control Board - the UN agency assigned the task of controlling licit opiod production and distribution.

In a recently published article in BMC Medicine, "Access to Pain Treatment as a Human Right," three researchers from Human Rights Watch discuss barriers to effective pain treatment. These include problems with procurement and distribution systems for pain medications, the need for adequate government policies to address the issue, poor instruction for healthcare workers, complex drug control regulations, fear of legal penalties among healthcare professionals, and the cost of medications.

But what is really shocking in the article is the estimates some countries give for their annual morphine needs. Burkina Faso estimates that 8 people need morphine per year. Gabon estimates 14. The Gambia, 31. Those lucky few. Even when the estimates are larger, they still represent a shockingly small percentage of those in pain. Kenya, for example, estimates that close to 5,000 people will need morphine. But that represents only 4 percent of the 115,000 people expected to experience severe pain from cancer or HIV/AIDS. The calculations don't even consider those who experience acute pain or chronic pain from other causes.

The Human Rights Watch report, "Unbearable Pain: India's Obligation to Ensure Palliative Care," took an in-depth look at palliative care and access to pain medicines in India. The report found that even though more than 70 percent of patients in India's major cancer care hospitals were incurable and likely to require pain treatment, the hospitals did not provide patients with morphine. Some simply did not have morphine, and some had doctors and nurses who were not trained to prescribe it. India has invested in advanced cancer treatment centers providing state-of-the art treatment. But for the large majority of cancer patients who arrive for diagnosis late and seek only medicine to address their pain, cheap, effective morphine, produced in India, is not available.

More needs to be done to help the tens of millions of people worldwide experiencing untreated severe pain. I wish I could say that the solution was simple. In one sense it is: morphine is cheap and it is effective. In another it is not: political commitment is needed to help those suffering, and to overcome the regulatory barriers and lack of training of health providers worldwide.

One patient told us: "I just kept crying...with that pain you think death is the only solution." We need to ensure that better solutions are available.

This was originally published in The Huffington Post.


Saturday, April 24, 2010

This Girl Has Helped Raise EDS Awareness - Let's Help Her Get On Glee!

Hello and good morning, dear friends! I hope you are enjoying your weekend! I am certainly enjoying a break in the weather. It was snowing on Thursday, and will be again in a few days (ugh!), but for now it is almost 80 degrees and super sunny. I will take it!

It came to my attention that a friend of EDSers is auditioning to be on the new TV series Glee. I am very excited by this, as Glee happens to be a guilty pleasure of mine. I wait until the episodes post online and then devour them up. Yes, they are cheesy, and are certainly a break from my norm, but I just soak up all of the show choir bliss each week with open arms and jovial ears!

I first was introduced to Michala through YouTube. Another EDSer told me I might like her music (she is a talented young artist), and that I would be moved by her efforts to increase Ehlers-Danlos awareness. She is sweet and adorable 16-year-old from Canada. She does not have EDS, but has dedicated a lot of her time to increasing awareness anyway.

Today, I was informed that she wants to be on Glee; I think it is a perfect fit for her! And, for all of her efforts to help out our cause, we should reward her with one of her dreams! :)

Please vote for her by following the link below, and by clicking to give her a 'gold star.' Each person can vote up to 150 (yes, really) times a day, so if you have time to sit and vote, please click away! The more gold stars she gets, the more her chance of winning. She needs thousands more than she has right now, so your help is greatly appreciated!

Here's her audition video:

VOTE for her HERE! (Scroll down and click 'Give a Gold Star')



Friday, April 23, 2010

Keys, Purse, Sticky Heat Pads? Check, Check...CHECK!!

Have an aching joint or severe muscle spasms?

One thing I NEVER leave the house without...those silly sticky heating pads you can find at all the drug stores! If I have a night out planned, grocery shopping, etc., I have these babies plastered all over me. I normally have a few more in my purse, and I always keep a few in the glove compartment of my car! This means the movies, a music show, or hanging with the girls for a cup of coffee. They are a must.

Heat doesn't really help me a whole lot as far as actually alleviating pain, but it certainly does help me not think about the pain as much. I will take it! I am allergic to latex, but most of them are latex free. I am also allergic to most adhesives, so it was trial and error finding brands that didn't affect me as much. I can deal with a little itching and redness, but not the hives that some adhesives give me. And, some brands stick better than others; some brands stick so badly that I rip my skin off with the pad when removing them. My friend with EDS has to find the stickiest kinds because nothing sticks to her skin. I think everyone is different. All in all, in my opinion, they are a worthwhile investment! (These are not the mentholated hot patches, these are the kind that actually warm up, temperature wise.)

The downfall that I see - they aren't very environmentally friendly. Unfortunately, this is one thing I use anyway. I am usually pretty good about finding alternative things, but these buggers seem to do the trick. I can't even concentrate with the severe pain otherwise. I bend for them.

If you are heading out, perhaps you should try a few of these, too! Hope they help!


Thursday, April 22, 2010

Earth Day 2010

"The question is not, "Can you make a difference?" You already do make a difference. It's just a matter of what kind of difference you want to make during your life on this planet." 
                                         ~ Julia Butterfly Hill, 
                                        environmental activist

© Danielle Davis 2006, Acrylic on Canvas

In honor of Earth Day, 2010, I wanted to share something that is very important to me. You may not feel the same way, but I would love for you to read with, at least, an open heart. This information is taken from a great website, This has some relevance to Ehlers-Danlos Syndrome, as we all know how important eating for our health is, and that is just one great thing about going veg. There is a ton of information on the site about how a veg diet can help your health. The posting below focuses (since it is Earth Day) on the planet. It may be a little 'extreme' for your tastes, but it is always great to gather perspectives from others. This info certainly represents mine.

I hope you are having a beautiful Earth Day (the 40th one!) and celebrating this wonderful planet and all she offers us, by helping her in any way possible! Enjoy! Much love and light!

in honor of our Earth,


Our Earth: How Every Bite Affects Mother Nature
by ChooseVeg

Becoming vegetarian is one of the most important and effective actions you can take to ease the strain on our Earth’s limited resources, protect the planet from pollution, prevent global warming, and save countless species from extinction.

According to Dr. David Brubaker, PhD, at Johns Hopkins University’s Center for a Livable Future, “The way that we breed animals for food is a threat to the planet. It pollutes our environment while consuming huge amounts of water, grain, petroleum, pesticides and drugs. The results are disastrous.”
As the Sierra Club put it in their 2002 report on animal factories, “environmental violations by the meat industry add up to a rap sheet longer than War and Peace.” 

Feeding large amounts of grain to farmed animals in order to produce a small amount of meat is an inefficient waste of limited resources.

According to Cornell ecologist David Pimentel, animal protein demands tremendous expenditures of fossil-fuel energy—-about eight times as much for a comparable amount of plant protein.

The meat industry is a major cause of fresh water depletion. According to Ed Ayres, of the World Watch Institute, "Around the world, as more water is diverted to raising pigs and chickens instead of producing crops for direct consumption, millions of wells are going dry. India, China, North Africa and the U.S. are all running freshwater deficits, pumping more from their aquifers than rain can replenish."

The great Ogallala aquifer, a resource that took a half million years to accumulate, will be depleted in less than 40 years.

According to Ayres, "Pass up one hamburger, and you’ll save as much water as you save by taking 40 showers with a low-flow nozzle." 

Cattle grazing is a serious threat to endangered species, both in the western United States and in the rainforests of South America.

In the United States, grazing has contributed to the demise of 26% of federal threatened and endangered species.

In The Western Range Revisited, a 1999 book published by the University of Oklahoma, author Debra L. Donahue writes, “Grazing’s ecological impacts are more widespread than those of any other human activity in the West, and elimination of grazing holds greater potential for benefiting biodiversity than any other single land use measure.”

The situation is no better in South America where the rainforests are being destroyed at an alarming rate in order to clear the land for cattle grazing.

According to the United Nations, ranching-induced deforestation is one of the main reasons for the loss of plant and animal species in tropical rainforests.

It is estimated that for each hamburger made from rainforest beef, members of life forms from approximately 20 to 30 different plant species, 100 different insect species, and dozens of bird, mammals, and reptile species are destroyed. 

Factory farms produce run-off that pollutes our streams and rivers, endangering not only the water supply for humans but also harming delicate eco-systems.

A U.S. Senate Agricultural Committee report concluded, “The threat of pollution from intensive livestock and poultry farms is a national problem.”

According to the EPA, over 200 manure discharges and spills from U.S. animal farms between 1990 and 1997 have killed more than a billion fish. Animal feedlots can contaminate nearby well water with high levels of nitrates, which have been linked to miscarriages in humans as well as “blue baby” syndrome in infants.

Manure lagoons and spray fields from animal agriculture also pollute the air by emitting ammonia, methane, and hydrogen sulfide.

According to a May 2003 article in the New York Times, “Around industrial hog farms across the country, people say their sickness rolls in with the wind. It brings headaches that do not go away and trips to the emergency room for children whose lungs suddenly close up. People young and old have become familiar with inhalers, nebulizers and oxygen tanks. They complain of diarrhea, nosebleeds, earaches and lung burns.”
(The article goes on to describe how air pollution from hog farms appears to have caused permanent brain damage in nearby residents)

And that is just the beginning...

Wednesday, April 21, 2010

ProAdjuster Chiropractic Treatment

Hi, friends! 

Today I am going to discuss something of controversy within the EDS community: Chiropractic Care. 

I am really excited to share this information with you, as I have had much success with this new type of treatment. I have been really scared (as I should be!) to see a regular chiropractor. I have had them pop joints out of place, and several hurt me worse than before I sought treatment. What has led me to seek chiropractic care in the past has ranged from general neck and back problems, subluxed vertebrae, dislocated ribs, and even a dislocated pelvis. Unfortunately, the last time I subluxed a vertebra and did not get in to the chiropractor, I was literally unable to move a muscle in my entire body without screaming in pain and was completely immobile for more than two weeks. So what were my options? 

When I moved back to Nevada last fall, I sought alternative treatments for my ailments, in combo with the regular doctors. I found a great chiropractor and he used a technique I had never heard of - a ProAdjuster Machine. There is no twisting, popping, dislocating, pain - nothing! You sit up in a chair. Easy. And, I am back to feeling better in less time than with traditional chiropractic treatment. For us EDSers, the only thing I have noticed as a downfall is occasional bruising, but nothing too bad or painful. It really does work. I have included the following article, written by my actual Chiropractor, Dr. Tony Jensen of Reno, NV, and also a very comprehensive video clip. Enjoy! Happy spines! (And, no, I am not a paid spokesperson! Ha!)


A New Breakthrough in Chiropractic Healing!
by Dr. Tony Jensen, DC

There is a new exciting breakthrough in treating and healing pinched nerves. Back and neck pain, headaches, numbness or tingling anywhere in the body can be caused by pinched nerves. Pinched nerves and their side effects are described in the Healthy Beginnings February, 2010 issue titled: “Pinched Nerve Caring for Your Nervous System.” Chiropractors believe in treating the source of the problem effectively and naturally. One should not have to rely on medication to get through the day, as drugs tend to mask the problem rather than treating it at the source. With the ProAdjuster Vision Technology, Chiropractic is taken to the next level.
What is the ProAdjuster? It is an advanced computer and engineering technology, with a hand-held device that allows Doctors of Chiropractic to both analyze and treat the human body in ways never realized before. Newborns, as well as the elderly with osteoporosis can be treated safely and gently with this innovative mechanism.

How does it work? The ProAdjuster computer system uses a piezoelectric sensor in the soft-tipped instrument to administer a precise oscillating force which measures specific levels of joint motion in a relaxed, effective manner. With the patient sitting in an upright position, the treatment is performed comfortably, without any turning or sudden movements. Data is then transferred and displayed on the computer monitor, allowing the doctor to isolate and treat the problem area faster and more accurately than manual procedures. Following the treatment, the ProAdjuster’s sophisticated re-analysis allows both the patient and the doctor to chart all progress toward successful recovery.

If you or someone you care about is experiencing the effects of pinched nerves & you are not under chiropractic care, NOW is the best time to start. Remember, it’s always best to rule out pinched nerves before other symptoms start.

For more info [in Northern Nevada], contact Dr. Jensen at Jensen Chiropractic (775) 323-1222.

To find a doctor that uses the ProAdjuster system, visit the ProAdjuster website. 

This original article was published in our wonderful  local magazine, Healthy Beginnings.

Tuesday, April 20, 2010

April 2010 - Updated Schedule for Supplements/Drugs:

It has certainly been trial and error with the supplements! I ended up going to a holistic doctor who helped me narrow down my list. I was spending too much money on things and not seeing a difference. Right now, my list consists mostly of vitamins and minerals, and I have taken out most herbs and mushrooms, etc. I am working to try some new herbal supplements, which I will update you on when I have a more solid plan. We took out things like the mushrooms, because I was taking them for about 4 months and noticing no difference in my joints, inflammation or energy, but they were costing me a lot of money each month. Now, I am getting the basics for everything I need, and I will be working with different doctors to add a new thing here or there. In addition to all of this, my diet has remained pretty healthy, and I have certainly noticed a difference in my overall well-being from that. I have added back some western medicinal drugs, and I will be working with a combo of those, the current supplements, and trying a few herbal things. I will post more updates soon! 
Morning (wake up, empty stomach):
  • Calcium/Magnesium, 1 Capful – Trace Minerals Research
    • It was recommended to me by my endocrinologist that I get around 1,500 mg of elemental calcium per day. Calcium is needed for bone health, for proper muscle function (the heart included), and it helps relieve muscle spasms and pain.
  • Vitamin D3, 5,000 iu – One that my doctor distributes. Per doctor’s orders.
    • Calcium can't be absorbed without enough vitamin D. People with fibromyalgia, EDS, etc. tend to have low D levels. Low D levels, as reported on EDNF's website, are linked with pain. Vitamin D aids in bone growth and reduction of inflammation. There is D3 in the Calc/Mag supplement as well.
Morning (with breakfast):
  • Vitamin C – 1 teaspoon (roughly 4 grams or 4,000mg) of Whole Foods Brand loose powder, mixed with juice.
Midday (with lunch):
  • Multi-vitamin (vegan) that contains manganese, folic acid, and zinc  (I am trying new multi-vitamins, so far I am using super concentrated liquids by Trace Minerals, but I am not going to continue. I will update you when I have found something I like.)
  • MSM – 1000mg Emergen-C
    • Relieves pain, provides support for tendons, ligaments, and muscles.
  • Chelated Molybdenum, 150mcg - Solgar (must take if taking MSM)
    • Essential trace element that MSM can deplete.
Afternoon (empty stomach):
  • B-12 Spray – sublingual –
    • Energy. It also helps make myelin, the substance of which the sheaths covering the nerves are made.
During the day
  • Flax Seed – (whole and ground) - for fiber and EFA (omega-3). Flax also really helps with digestion, constipation, diarrhea, IBS. EFAs are important for protecting your cells against damage, and also help in reducing fatigue and relieving pain. EFAs also help with circulation and blood pressure stability. Mainly, now, I am incorporating flax into my diet. For instance, I am making raw flax crackers.
  • Flax Oil as well
  • Vitamin C – 1 teaspoon (roughly 4 grams or 4,000mg) of Whole Foods Brand loose powder, mixed with juice. (For a total of 8-10K mg a day).
When Needed
  • Colloidal silver for UTIs, infections, etc.

Prescription Drugs:

  • Bipolar Disorder – Trileptal (Oxcarbazepine) 900mg (300mg in morning and 600mg at bedtime) and Celexa (Citalopram HBR) 40mg
  • Sleep Aid – Ambien 10mg (only on nights when needed)
  • Birth Control – Sprintec 28 (generic for Ortho-cyclen 28)
  • For pain, I am working with docs to try new things. So far, I am just using up some old Vicodin, Percocet, Flexeril, etc. I will update you when I have a solid plan of attack.

Tuesday, April 13, 2010

Disabled? Lifetime Pass for National Parks - FREE!

In honor of National Park Week (April 17-25, 2010), I wanted to inform you of a really sweet deal for people who are permanently disabled! I LOVE the outdoors and LOVE visiting National Parks...and now, I can do it for free!

There is this great program out there called America the Beautiful: The National Parks and Federal Recreational Lands Annual Pass, that has a side program, for those permanently disabled, called the 'Access Pass.' Access Pass holders can get into Federal Parks and National Parks for free, at areas that charge an entry fee. It is good for a car load of people (the Pass Holder and up to three other adults), discounts on campsites, etc. All you have to do is show up at one of the offices listed, in person, and show proof of your disability to get the pass. :) That is it! It is good for your lifetime! Then - get out and enjoy some sunshine, take time to smell some flowers, and soak in the sounds of the wild! 


Offices to obtain pass (search site for local office)

Much love, peace, and happy trails!

Sunday, April 11, 2010

Social Security Disability: The Judge's Approval Letter

Notice of Decision: Fully Favorable


That is the feeling I got when my lawyer's office called me! A few days later, I received this letter in the mail. I got the idea to share this letter with you, as an addition to my last post, from another EDSer with a blog, Bunny. Again, for legalities, everything in this post is my opinion and you should seek legal council for legal questions or concerns. :) I will be changing some names and omitting some things, but this is the main bulk of my approval letter. Enjoy! Hope it helps you see what sort of things made an impact on the judge so you can win your case!

Everything in parenthesis is my own remarks, by the way.


After careful review of the entire record, the undersigned finds that the claimant has been disabled from May 29, 2008 through the date of this decision. The undersigned also finds that the insured status requirements of the Social Security Act were met as of the date disability is established.

(This is REALLY summarized and shortened:)

Judge's steps -

Step One: Determine whether the claimant is engaging in substantial gainful activity (working and making above a certain amount of money, aka SGA, aka Substantial Gainful Activity). If an individual engages in SGA, she is not disabled regardless of how severe her physical or mental impairments are.

Step Two: Determine whether the claimant has a medically determinable impairment that is "severe" or a combination of impairments that is severe....if it significantly limits an individuals ability to perform basic work activities.  If the claimant does not have a severe medically determinable impairment or combination..., she is not disabled.

Step Three: Determine whether the claimant's impairment or combination of impairments meets or medically equals the criteria of an impairment listed...If it does not, the analysis proceeds to the next step.

Step Four: (Has to do with the claimant having the ability to perform any duties she did at all of her previous places of employment. If the claimant cannot do any of the past job functions, you go on to step five. If she can, she is not disabled.)

Step Five: Determine whether the claimant is able to do any other work considering her residual functional capacity, age, education, and work experience. If the claimant is able to do other work, she is not disabled. If the claimant is not able to do other work and meets the duration requirement, she is order to prove that the claimant is not disabled at this step, the [SSA] is responsible for providing evidence that demonstrates that other work exists in significant numbers in the national economy that the claimant can do...


(Okay, so basically, they are going to go through four or five steps to determine if you are disabled, if you can or cannot work based on past work history, your illness, and jobs that are available in the current economy.)


(Below is what the judge summarized for me and my disability.)

Findings of Fact and Conclusions of Law:

1. [Danielle's] date last injured is December 31, 2012. (This basically means the last date you could apply for disability benefits. It is based on the last day you worked and paid into the system. You really don't need to worry about this date unless your date of injury/day you became disabled was a long time ago. Now, I know our EDS started a long time ago, ha!, but this counts from the 'day you became unable to work' which I discussed at length in the last post.)

2. [Danielle] has not engaged in [SGA] since May 29, 2008, the alleged onset date. (This just says I didn't make money/enough money to ruin my case since I applied. Basically, that I didn't work or work a lot during this time. I personally did work for 2 months. This was a big mistake. It was part-time and I called in sick a lot and then had to quit because my body just couldn't take it. The judge said this was 'an unsuccessful work attempt' - thank goodness! It could have really ruined my case. In fact, my lawyer said I might not win just because of this, which is why I stress so much about NOT working at all.)

3. [Danielle] has the following severe impairment(s): hypermobile Ehlers-Danlos syndrome (EDS); posttraumatic stress disorder (PTSD); affective disorder; and orthostatic tachycardia. The medical evidence of record reflects medical signs and findings establishing diagnoses [EDS]; [PTSD]; [BPD]; [POTS]. These impairments and their symptoms have limited [Danielle's] ability to perform the mental and physical demands of basic work activities, including understanding and carrying out complex tasks. Therefore, the undersigned finds that these impairments are severe.

4. (This one is mumbo jumbo saying that I don't have a disease or impairment listed on their automatic approval list, like a brain tumor. It does say the following though, which is important to note:)...mild restriction in activities of daily living, moderate difficulties in maintaining concentration persistence or pace, and no episodes of decompensation, each of extended duration.

5. [Danielle] has the residual functional capacity to perform sedentary work as defined in [legal codes]...except [Danielle] is not able to perform physical work activity on a sustained basis; and is unbable to do work that requires more than limited public contact.

(Okay, so this means the judge had to go through all 5 steps in making his conclusion. This part is REALLY LONG and it is the summary of question 5, continued from above. Let me take a break, get something to drink and rest my hands...this is tough on the wrists! Haha!)

(Here we go, number 5, continued:)

(This is the judge's words, unless I comment in parentheses:)

...Evidence indicated that [Danielle] complained of Ehlers-Danlos syndrome, depression, posttraumatic stress disorder, and orthostatic tachycardia. She insisted that her pain limits her ability to sit, stand, and walk for prolonged periods; and she reported that she experiences frequent migraine headaches, and constant and persistent pain. She maintained that she is unable to return to past able to independently take care of her own personal needs and activities of daily living, with additional time to compensate for pain. She indicated the chronic pain affects her ability to sleep throughout the night. [She] reported that she requires braces for her knees, ankles, elbows and wrists. Additionally, she was prescribed compression stockings by her cardiologist. She stated that she was able to drive short distances, go out alone, and shop as needed. Additionally, [she] stated that she is able to complete light household chores. She indicated that she remained socially active with her boyfriend and mother. Because of the mental issues...she has difficulty accepting criticism from others, or handling stress and changes well. She maintained that she has a short attention span, and is able to follow most instructions. (Not all of this is quite as I said it, but he obviously got the point.)

She stated that she last worked from May to June 2009, but had to stop because of her impairments. She indicated that she is unable to work because of chronic dislocations of her shoulders. Additionally, she indicated that she has difficulty standing because of the chronic dizziness. She described her pain as possible and persistent. [She] stated she experiences chronic pain in her hands and shoulders. She testified that she has to wear wrist and finger splints because of constant pain. She also complained of PTSD secondary to physical and sexual abuse experienced as a child and teenager. [She] also reported...panic attacks and difficulty sleeping because of nightmares and flashbacks. She stated that she is unable to handle large crowds, and prefers to isolate. Additionally, [she] reported chronic fatigue secondary to EDS. Because of difficulty with her impairments, [she] was [prescribed] a wheelchair by her treating physician.

After considering the evidence of record, the undersigned finds that the claimant's medically determinable impairments could reasonably be expected to produce the alleged symptoms, and that [her] statements concerning the intensity persistence and limiting effects of these symptoms are generally credible (YEAH!).

[Danielle] has a significant history of hypermobile Ehlers-Danlos syndrome, and orthostatic tachycardia. Following a referral by [rheumatologist], [she] was diagnosed in August 2005 by Johns Hopkins Hospital geneticist Dr. Howard Levy (I know some of you were, too!!). [She] reported a history of chronic dislocations of her joints, and constant and persistent pain and discomfort. Although the least severe form of EDS, Dr. Levy indicated that [she] would experience significant pain and related symptoms, and indicated that this disease was progressive. He noted joint subluxability in her wrists and interphalangeal joints, on the right greater than the left; mild laxity of the left elbow; laxity in both shoulders; marked hip joint laxity; and arachnodactyly (What is that?! It means 'spider fingers'!). He recommended that [she] continue with physical therapy and exercise for strengthening, and continued use of the splints or braces for joint support. In addition to EDS, Dr. Levy indicated that [she] demonstrated significant arthritis and femoral patellar syndrome; and noted that [she] bruises easily.

In April 2008, treating physician [primary care doctor] referred [her] to [cardiologist] because of chronic chest pains and dizziness. However, a [MRA} reflected no evidence of aortic insufficiency. [She] continued to complain of postural lightheadedness, and a tilt table test revealed significant orthostatic tachycardia. Treating cardiologist monitored [her] symptoms from April 2008 through June 2008. Simultaneously, [she] received chiropractic care, but realized only some relief through manipulation and treatment. In May 2008 doctor's notes indicated that the claimant was mildly symptomatic, and [her] symptoms were reduced with treatment.

In August 2009, [Primary care doctor] opined that the evidence of record demonstrated significant limitations in the [Danielle's] ability to work. Based on genetic findings, psychiatric diagnosis, low bone density scan, positive tilt table tests, and treatment records, she opined that [Danielle] was unable to work because of her significant impairments. She indicated that [Danielle] experienced chronic dizziness and fatigue, and significant pain in her knees, hips, back, and elbow. [Doctor] noted that [Danielle's] shoulders, knees, and ankles easily dislocated. Because of chronic pain and fatigue, [her] ability to concentrate and maintain attention is significantly reduced. Additionally, [Danielle's] progressive EDS required the use of a wheelchair for prolonged ambulation. Similarly, treating physician [endocrinologist] echoed the assessment of [Primary care doctor]. She opined that the combination of physical and mental impairments significantly impacted [Danielle's] ability to return to work, or sustain full-time work on a competitive basis. Treating orthopedist noted that [Danielle's] EDS required physical therapy and exercises to relieve the symptoms, but indicated that all treatment was supportive only. She indicated that EDS was progressive in nature, and could not be resolved.

In reviewing [Danielle's] records in September 2008, DDS consultant Dr. Michael Cole noted the examinations that indicated that the claimant had significant joint laxity and subluxability. Although physical examination results were fairly normal, consultative Dr. Seth Tuwiner (This is the doctor the SSA made me go to who poked me in the knees, said I should go back to school and that I was fine. The entire appointment lasted like 5 minutes in length.) noted some impairments of fine motor coordination. He opined that [Danielle] was able to stand and walk  4 hours out of [an] 8-hour workday (umm...WHAT?!); but had no manipulative or postural limitations (yeah right!!). He indicated [Danielle] was capable of lifting and carrying up to 10 pounds. However, Dr. Cole, noted that Dr. Tuwiner's assessment did not fully consider [Danielle's] vulnerability to joint dislocation, chronic pain, and orthostatic tachycardia. (Thank goodness one of the SSA doctors was using their head!) Therefore, Dr. Cole opined that [Danielle] was capable of sedentary work; but was restricted in all climbing, frequent balancing, and occasional other postural activity. He further opined that [Danielle] should avoid all exposure to hazardous machinery (LOL! You think?), or working at unprotected heights. In a subsequent review of [Danielle's] records in January 2009, DDS consultant Dr. Leopold Moreno affirmed Dr. Cole's assessment as written.

(This paragraph contains private mental health notes, so I am skipping it.)

(The next paragraphs are by two doctors hired by the SSA as well. They contain personal info I am not posting either. However, the significance of these paragraphs is that both doctors, Dr. Walter and Dr. Lake describe how neither my physical nor mental impairments would present a problem in my ability to work. Lovely.)

(So, moving on...and this is where the judge weighs ALL of the info and summarizes his decision...)

The undersigned (the judge) gives the well-supported assessments by [Primary care doctor and Endocrinologist] GREAT WEIGHT, as the evidence indicated that the progressive nature of [Danielle's] physical impairments significantly impact her functional abilities, which are expected to deteriorate over time. In combination with her mental impairments, [Danielle's] functional abilities are significantly eroded (nicely put!), and further limit her ability to sustain regular, full-time work. The undersigned gives minimal weight to the assessments by Drs. Cole and Moreno (Woohoo! That means what my doctors said was WAY more important than what the SSA doctors said!), as subsequent evidence supported [Danielle's] allegations of significant limitations in functionality. The undersigned also give little weight to the assessments by Drs. Lake and Walter (Again! Phew! That could have really damaged my case if he believed what they said to be true!), as the combination of physical and mental limitations, when considered as a whole, significantly affect [Danielle's] ability to perform even minimal tasks.

( it comes...drumroll....)

Therefore, after careful consideration of the evidence of record, the [Judge] finds that [Danielle] has the residual functional capacity to perform sedentary work as defined in [legal garbage codes] except [Danielle] is not able to perform physical work activity on a sustained basis.


That pretty much sums it up. :) So, I hope that if you get to this point in the process, that this will be of help to you and even perhaps your attorney. I know reading Bunny's really helped open my eyes to how much they delve into your life and how they will scrutinize every last particle of your being to try to prove you wrong. A lot of cases that are won really depend on which judge you get, from what I have heard. I happened to luck out and get a great one. When the hearing was over and the tape recorders had shut off, he told me that during the whole process he couldn't help but look at the rings on my hands - his WIFE wears them, too, for her rheumatoid arthritis! How funny! Perhaps that little connection helped me! Now, I hope this is of help to you.

A few more tips:

  • If you do go to 'court,' it will be a hearing and it isn't as scary as it sounds. It is a small room with a judge, your attorney and a few other people there to help. Some of them were doctors (probably to discredit anything I was saying if it was wrong, and also to explain medical lingo to the judge if needed), the SSA representative speaking on behalf of those who denied the first two applications, etc. They give you plenty of time to say what you need to. And, there was a box of tissue if you got emotional about any of it - I needed it!
  • If you do win your case, don't expect your money to start flowing in. It normally takes a few months to get your decision back from the courts, so you won't even know for a while if you have won or lost. You will not be getting your back payments any time soon. It took me 7 months before I got mine. And, even then, they give it to you in chunks, not all at once.
  • Just to clarify, 'back payments' are monies owed to you from the time you originally applied all the way to the time you are approved. They will owe you for this. However, your lawyers fees come out of this. Also, don't forget about that five month chunk that they 'don't count' - you won't get anything for that.
  • And, again, you aren't eligible for 2 years to get on 5, 2 years and 5 months. Gotta love that 5 month thing!

Okay, I have to go rest my hands and wrists with some ice. I also may take a few days off before I do another post. This took a lot out of me! :P I hope you all are having a great day and enjoy your week!


Saturday, April 10, 2010

Social Security Disability: The Application Process

As I mentioned in previous posts, I was approved for Social Security Disability in September 2009. The process was not only difficult, but also lengthy. I am giving you my story in hopes it will help you win your case, or so you know in the future what you might have to go through if there comes a time you are unable to work. This information is purely my opinion, and you should seek a lawyer for any legal advice. I am not going to go thoroughly through each and every step, as I would have to write a book. Instead, I am going to touch on the things you will be experiencing, some tips and advice, and the basics for how I was approved.

First, if you can work, you are not 'disabled' in the eyes of the SSA (Social Security Administration). Not only must you be unable to work at your last job, but during the course of the long process, you have to prove you can't work any job...making sandwiches at a sub shop, greeting people at Wal-Mart, taking tickets at the movie theater, even laying in bed at home and working from your laptop. Chances are, if you can do any of these, you aren't going to be approved. (And, don't we all know how rocky every day can be! One day feeling good and the next we have dislocated a rib!) Second, it can't just be you that feels this way. You must have backing from your doctors that say you are unable to work as well. You can't be working and decide that when you get fired you will try to get on SSD (Social Security Disability). You actually have to be disabled, and unable to work to be eligible. (There are other criteria as well, including that your condition will keep you disabled for more than 12 months, or result in death.)

So, when exactly did you become disabled? It is a tricky question. For me, it was the day after the last day I worked. I was having so many issues at work because of my EDS. there were many, but some included exacerbated back pain and wrist pain and getting written up for missing too much work. I eventually was 'told' I needed to quit or be fired. They couldn't legally fire me for the medical reasons, but I decided it was a good time for me to leave. I really was having too many physical problems to continue working, and they were just getting worse by the day. I worked my last day on May 28, 2008. So, the date I became disabled, as in no longer able to continue working for even one more day, was May 29, 2008. The sooner after this date that you apply, the better. Apply as quickly as possible to get the process started. First, it takes a long time. Your doctor must agree on this date too. If you aren't working but are managing to go to school, you might find it harder to get approved. Attending classes just shows the SSA that you are able to keep commitments and function properly in such an environment.

To apply, you can go in person to your local SSA office, or you can apply online at the SSA website. My favorite website for info on how to apply, cool tricks and tips, and super straightforward answers to FAQs is here. I highly recommend that BEFORE you apply for SSD, you should really check this out and do some homework.You will be filling out very specific info. You will do a few interviews with people over the phone and in office at the SSA office in your area, and then you will wait. I waited several months before I got word. You should be VERY prepared ahead of time.

If you get approved on the first try, great for you! Hooray!

To be honest though, most people don't.

If you don't get approved, this is where they say, "GET A LAWYER!" You certainly don't have to, but there is NO way I could have done this without mine; if not just for having someone with expertise in the SSD field, they also have to do the horrific piles of paperwork written in crazy legal mumbo-jumbo! The lawyers don't get paid unless you win your case. I didn't have to front any money. They get a lump-sum from your SSD if you win. The amount is set ahead of time by the SSA and the Federal Government. All lawyers should charge the same percentage.

The appeal (your SECOND ATTEMPT at getting SSD):
If at first you don't succeed...well, now is time to get even more hunkered down. You have a small window to appeal. My lawyer did this for me. Basically, they refile all of your paperwork and a different team investigates your case. And, then....they will probably deny you again! Yikes!

I was told most cases go on to ROUND 3: the hearing. Mine did. Once you receive your second denial from the SSA, you can file to go in front of a judge and make an appeal in court. The majority of SSD cases that actually get approved are done so in this round. Level 3. The big one. You thought you had some waiting to do before? Well, now is the time to be patient. This takes even longer. It also involves a lot more paperwork. Yippee!

Once you get your hearing date, you will have to prepare all of the documents. My hearing was on September 2, 2009. That means from the first application being filed all the way to the hearing where I saw a judge, it took roughly one year and five months. During this time, I was not able to work. During this time I had no insurance. And, during this time I really got to understand what patience means!

Here are my personal tips, things I have learned from friends who went through the process, and from lawyers:

1. From the very first moment you apply until your court date (if you have to go that far), YOU MUST continue to see doctors. This was very challenging for me. I had no money. I had no insurance. Bottom line, the SSA doesn't care. IF YOU DON'T HAVE DETAILED, CONTINUING DOCTOR'S RECORDS, YOU ARE NOT GOING TO BE APPROVED. You must go to the doctor regularly. If this means going to your local free or discount clinic, begging for your doc's office to give you discount pricing, going to doctors farther across town, it doesn't matter. Do it! They want to see that you are so sick that you have to still see doctors. They also want to see that you are willing to see doctors to help your situation.

2. A general doctor, like your regular family doctor, is probably not enough. My lawyer advised me that I really need to try and see specialists as well. The more doctors to back up your EDS problems, the better. Have mental health problems, too? Seeing your psychiatrist is important. This could hold weight, too. Whichever doctors you do see, make sure they all know you are trying to get approved for SSD. That way, when the time comes for them to fill out their paperwork, they are prepared.

3. Don't go getting a job half way through your wait. This will probably ruin your chances. If you HAVE to work, there ARE LIMITS on the amount of hours you can work before you void your process. It is REALLY recommended that you DO NOT work, of course.

4. Don't tell lies, but don't minimize your symptoms either. From the first phone interview forward, they are going to ask you questions about how you get ready in the morning, how you sleep, if you need help bathing or getting dressed, if you are able to cook, if you clean, if you do laundry, what medicines you are taking, if your living situation is one where you can get help with all of this, etc. The questions will get personal. If you aren't really straightforward and up front, they are not going to even give your case a second look. I have trouble walking most of the time. There is no way I can vacuum, heck - standing up can be too much. If I have dislocated my shoulders or ribs, I need some help getting dressed. I can't stand in the shower, but sometimes I can't sit either, because the hot water really just makes my POTS worse. I mean, you really have to get down and dirty and just tell them everything. And, if it happens often, don't just say that it is only 'sometimes'. MAKE YOUR CASE. Don't hold back.

5. If you are approved, they automatically have a 'waiting period' before you get your benefits. It is five months. I applied at the beginning of June in 2008. When I was approved, they didn't backdate my approval the June X, 2008. They backdated it to five months later, November 2008. Be prepared for this.

6. If you are approved, you aren't eligible for Medicare for 2 years...after the 'date' you started your benefits. This is not the month you became disabled. This is the month you became disabled PLUS five months. So, although I became disabled in on May 28, 2008, my Medicare eligibility date is November 2010. (That is, November is my 5 month mark, and you have to wait two years.) Confusing, I know! So...I still don't have Medicare. I am STILL waiting. Ugh! You may be able to get Medicaid before that date. I am unable to; I make 'too much money' from my SSD earnings. What?! Yes, seriously. Not that what I get is near enough, but it is too much according to Medicaid.

7. The amount of earnings you will get from SSD, if approved, is based on your work history and how much you have paid into the SSA fund over all the years you worked. The more money you make while you are working, the more money your SSD checks will be, as you have paid more into the system. During the application process you will be asked to provide detailed work history information. They will compare this with the info they have from the IRS as well.

    If I think of anything else, I will post it at a later date. I hope this helps you!!

    My next post will be the approval letter I received from the SSA. It was written by the judge and I hope it will help you to see what he found moving in my 'testimony' and the parts that made him agree that I was clearly disabled.

    I hope this find all of you well, not in too much pain, and your heart full!


    Thursday, April 8, 2010

    Quick Inspiration!

    "Blessed are the flexible, for they shall not be bent out of shape." 
                                                                      ~ Anonymous

    Sequoia National Park, California

    Thursday, April 1, 2010

    Update on Bipolar Meds

    Hope you had a great day and are ready for the weekend. I had a ton of back pain today. It seems to be getting worse as the months go on. Ugh!

    For the bipolar treatment I was trying last summer, I was attempting to find a way to treat the BPD naturally. I posted all the info last summer on an alternative to Lithium Carbonate (medicine prescribed by docs), called Lithium Orotate (which you can get at health food stores). I started the trial by doing just a small dose, and over 3 months time I worked up to a maximum dose (or what I could find listed on the internet as a maximum dose). Unfortunately, I have to report that this did not work for me in the least. It was a very stressful time in my life, and I ended up in a very bad state. I tried to remedy this by seeking out a therapist and giving that a try as well. The downward spiral continued. Eventually, after being off of meds for a year, I finally went back to the psychiatrist and decided to try another round of medicine - hoping to find a good combo this time.

    I am happy to report that I am the most happy and comfortable I have been in many years. Mentally, I am now clear and happy, and I feel like I finally have the perfect mix of meds (combo of 900mg Trileptal and 40mg Celexa). I wish I can say, in this instance, that the alternative treatment was a raindrop in the desert, but for me I didn't feel that way at all. That doesn't deter me from continuing to try alternative treatments for other things, but I feel that my body and brain really responded wonderfully to the Rx and not the the holistic choice. That, however, does not mean that I will be using the medicine as my only source of relief in my battle with this mental illness. In fact, I think the other treatments are just as important. I am working on a mix of yoga (an old lady class for people with disabilities! Ha!), meditation, swimming, water fitness classes, counseling, diet/lifestyle, continuing to abstain from alcohol, and treating myself with love. I will continue to report on my progress!

    For the few of you I know with EDS and bipolar disorder, don't feel like all is hopeless. It takes time to find a treatment that is right for you - and I won't discount anyone for anything that they try - I just wish you happiness and peace of mind. And, as always, know that you are not alone. :)

    Much love to you all! I am off to bed to try and sleep - if my back will ease up just a little and allow me to rest! Have a low-pain Friday!