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What Most Doctors Don’t Know About Social Security Disability – And The SSA Doesn’t Tell You!

I had a follow-up doctor’s appointment a while back. I told him about the last two months health-wise, and brought him up-to-date with my most recent Social Security Disability Hearing and told him that it probably wasn’t looking good for me… Again. As usual, he couldn’t understand why I was still fighting; and then we continued on with my appointment.

I was about to leave the room and something popped up in my head (I love how my brain works now). I stopped, and asked him if he ‘knew of a form I read about online that Social Security apparently wants from doctors. That for some (ridiculous) reason, the SSA doesn’t really give too much weight to short letters written from the doctor; but this “Residual Functioning Capacity” form (linked below) is pretty important… Apparently, it can be the deciding factor in some cases?’doctor-patient-consultation

I don’t think my brain said it as eloquently when I spoke, but luckily he understands me–even when I babble and slur.

It turned out though, that he didn’t really know anything about this form (he ‘thinks he heard of it’, he claimed, but asked me to send him a copy)! I can’t blame him for not really knowing about it honestly. A doctor’s word should matter to the courts when it comes to treating and supporting his or her patient–and Social Security should use any records or letters put into evidence, as long as they detail the diagnoses and note whether or not they consider the patient permanently disabled.

But if a doctor’s letter doesn’t entirely count as far as the SSA is concerned, why hasn’t this practice been changed?

What concerns me is how many doctors don’t seem to know about this form (or how to file for Disability). They believe Social Security should take their word as gold that their patient is permanently disabled. But Social Security is basically stating, ‘Your letter and word as a physician isn’t enough, we want you to fill out an eight page form explaining, in detail, what their disability entails’.
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With today’s technology, why can’t someone contact the doctor if they have any further questions (beyond the medical records)? Wouldn’t it be better to have a more personal account of a patient rather than make them fill out a detailed, “Can your patient lift 5/10/20 pounds on a regular basis – if so/not, please explain” form.

Instead, everyone’s fate rests on the hand of the SSA’s expert medical witness’ testimony (whom may or may not specialize in your illness(es)) by reading only the doctor’s notes–yet not hearing from the patient themselves. Therefore, they are basing their opinions on medical records that may or may not be detailed and complete.

Can you imagine the scores of people that keep getting denied Social Security and are constantly struggling, becoming homeless, and even dying because this ONE FORM wasn’t filled out by doctors–most likely because they didn’t know that it existed in the first place? (Note: When I tried finding it through the Social Security Website, I kept getting a “404 Error” message every time I tried to reach the page – It does exist though – see below for the link!).

PLEASE, everyone, SHARE this page! Tell your friends that are fighting, or about to start their fight, for their Disability benefits to print out the RFC form linked below–and make sure your doctor gets a copy. Have them share it with their colleagues!

Help stop this insanity!PH

There’s so much I would have loved to have known when I became ill enough to be ultimately forced to apply for Disability. I truly hope that this helps someone so they don’t have to go through what I have… and still am because of poor medical treatment and recordkeeping.

I eventually began searching online, rather than the SSA website for the form, and finally found a copy that can be printed out HERE (pdf version). I’m hoping that doctors will start hearing more about the RFC form–and start helping their patients with disabilities win their Disability fight in a timely manner by filling it out.

I’m hoping even more that Social Security catch up to the times and realize that today’s doctors aren’t old school like Social Security still is (Come on, the system has barely changed since 1935–Over eighty years!). Doctors just don’t have time with the amount of patients they have to take care of today to fill out eight-page reports. Detailed notes (including via telephone) and detailed record keeping should be able to properly show a patient’s health status without question; while a patient’s testimony should be taken strongly into consideration–especially if a case lasts longer than five years.

No one should have to wait more than five years for their benefits.

Both the Social Security System and the medical industry need to create a simpler system that both can work with, so people that are truly disabled get their benefits in a more timely, and less stressful manner.

It is our money after all.

Until the laws get changed though, get that RFC form to your doctor’s office and ask them to fill it out along with your Disability application.

Good luck!!!

Prescription Commercial Propaganda

News Update (4/26/16): Biogen has announced that it will be taking down their Tecfidera Commercial. For full story, click here.

movies-at-home(Originally Posted 3/13/16) You’re sitting there, the kids are in bed, and the housework is finally done. You’re relaxing on your sofa enjoying a late night snack, while watching an episode of your favorite TV show. You are just about to find out whodunnit; your adrenaline is pumping and your eyes are glued to the screen. Then it happens.

A station break.

This one in particular happens to be about a medication that is offered to people living with Multiple Sclerosis. The commercial says the medication is made to cut relapses in half, while it shows a video of a woman that apparently has Multiple Sclerosis; smiling, hiking, swimming and even enjoying an evening at an amusement park. It all looks so wonderful, carefree, and happy! How fabulous it all seems to be.

Excuse me for saying so, but what a load of manure!

I’m not saying that the medication is bad. I’m not saying anything bad about any of the medications that have been made to treat the symptoms caused by Multiple Sclerosis. At least they are trying to find a cure.

My issue is that the person in the video is portrayed as a happy-go-lucky woman that is living with MS, and able to perform normal activities just like healthy people are easily able to do.

It’s nowhere near the truth for most people with MS in the real world! I think it’s disrespectful to people that live with Multiple Sclerosis, because it misleads the public into believing that something like this can magically happen for everyone living with the disease.

We wish that was truly the case!

While some people are able to have some benefits by taking some of these medications (MS medications in general, not one specific brand), not everyone responds to them as well as these ads claim. In fact, a lot of people don’t have many benefits from them at all, if any.

If you are someone that doesn’t live with MS (or any other type of chronic illness or disease), after seeing a commercial like this you would think that it was great that there’s a medication for people living with the condition, right? Have you ever actually listened to the commercial though? If not, you should. The next time you see that commercial (or any commercial advertising medications), listen to it very carefully (Or you can just watch the YouTube video I found for one of the commercial’s posted above).

The truth is, if pharmaceutical companies were to take a video of actual people living with Multiple Sclerosis (Lupus, Fibromyalgia and so many more disabling illnesses), you would see many of us using mobility and other assistive devices. You would see people that are fighting every day just to try to have a semblance of a normal life. You would see us saving our energy just so we could go someplace, like an amusement park… or maybe just the supermarket.

All of this while we are dutifully taking our medications.

But that wouldn’t make for a very good commercial, now would it?

 

Symptom of "Flushing"

Flushing symptom – A common side effect of the medication, Tecfidera.

 

Flushing2

 

Feel Better Soon

feel better soon

When you live with a chronic illness you hear that all the time. “I hope you feel better soon”. While it’s a truly appreciated sentiment, it’s also a phrase that is hidden in plain site, showing how much most people truly aren’t aware of what it’s like to live with a chronic illness.

“Feel better soon” implies that someone has an illness or injury that they will eventually recover to their normal activities. A person living with a chronic illness doesn’t get to do that. We are living a constant loop of pain, sickness, and surprise symptoms to the point that we wish we literally and finally could just simply “feel better soon”.

I saw someone on Twitter speaking about the pain she was having due to an illness she was living with (Rheumatoid Arthritis). As I wrote my comment to her I was about to end with saying, “feel better soon”, when it hit me (well, I’ve thought it many times before, but this time it really hit me)… Instead of saying the norm, I should say what she and I are really hoping for. So instead I finished with, “I hope your pain lowers soon”.

When you live with a chronic illness, you know that unless you are one of the lucky few that go into full remission, the pain never completely goes away. That doesn’t even include the fatigue, cognitive issues, mobility issues and social isolation, financial stress, family stress; everything takes a bigger toll on the body of the majority of people living with a chronic illness or disease.

Even more so with invisible illness/diseases (An illness that a person lives with, but generally looks healthy to the naked eye). Even though there are people that are truly sick, it’s not unusual that they are treated with a more, “Come on, you can do it. Just try a little harder!” attitude. (cough) “A brother’s best friend’s aunt has the same thing, and they are doing just fine”. Little do they realize that there are different stages of chronic illness and diseases; and that no two people are alike when it comes to any given diagnosis.

Most people don’t even realize what it took to get the energy just to take a shower today.

Trust me when I say I’m as tough and stubborn as they come, and I have been through the wringer a few times over since I have been in “full chronic illness mode”. If someone says to me that they hurt too much or can’t do it anymore, that pretty much says it all in my book.

I still have dreams of getting my life back one day, so I can only imagine what it’s like for someone else.

If only we really could just feel better soon.

When I Grow Up, I Want To Be…

bobby-car-349695_960_720When we were children growing up, our parents told us that we could be whatever we wanted to be – A firefighter, policeman, doctor, nurse, lawyer; even the President of the United States! They told us that all we have to do is work hard to achieve our dreams by being honest and kind, do our homework and chores, and eat all of our vegetables.

Our imagination went wild because of that, too. We happily acted out our futures with our teddy bears and dolls how we wanted to make the world a better place; even imagine getting married and having babies of our own one day.

Never has a child told their parent, “When I grow up, I want to be disabled. I want to be tired and in pain all the time, have sleepless nights and spend lots of time and money in the doctor’s office and at hospitals. I want to take all kinds of pills that have the possibility of killing me; and basically gamble on my quality of life.”

One day you wake up though, and suddenly your life has turned out this way. You thought you did the best you could to take care of yourself, but you didn’t realize that chronic illnesses didn’t work like that.

You start visiting doctors to see what’s going on with you, and if you are really lucky, you get a diagnosis right away. But, if you’re one of the less lucky ones, you are forced to spend years of your life returning to the doctor over and over again, still without any answers… Maybe you even get pushed into categories like hypochondria or psychosis because they think you’re just making everything up.

One day, the career that you did have is suddenly over way before your retirement age. Your family dynamics has changed completely, and your family is now having to take care of you! A role you are definitely not accustomed to, nor comfortable with, but have no choice but to accept it.

Sometimes even the closest families fight and break up, because the financial and emotional stress of someone they love being sick and disabled is devastating and overwhelming.

Then, of course, there’s the fight for your disability payments. People that complain about the DMV should try filing for permanent Disability. You see, it doesn’t entirely matter that you have three or four doctors telling the government that you are permanently disabled and unable to work. No, Social Security has to have perfect records (which most doctors don’t keep to their expectations) explaining your limitations all the way from how long can you sit/stand, to how much weight you can lift at a time.

So many people get turned away because of this. Too many people losing everything they worked hard their entire lives for – while no one in our government has done anything to change this atrocity–except try to take more away from us.

Never has a child told their parent that they want to be a divorced, disabled, homeless person when they grow up.  But sadly, too many lives are becoming just that.

Doctors Need Two Left Shoes

legs1I have come to a conclusion. I think the medical profession (especially doctors) needs to wear two left shoes.

“Why?” you might ask? Well, I’ll tell you…

Living with a chronic illness, we always wish people could understand what it’s like being sick 24 hours a day, 7 days a week and 365 days a year. However, we would never ever wish our pain on another person — We know too well what it’s like to be hurting all the time, and wouldn’t even wish it on our worst enemy.

Empathy is a funny thing though. If you “feel” what a person is going through, then you appreciate better what their pain is like, even if you can’t see it with your own eyes.

So, I figure that if people in the medical profession wore two left shoes for just one day, they will quickly be reminded what it’s like to live and work in pain — And offer more empathy to their future patients.

If they need an extra reminder, they can wear two left shoes of a smaller size for a refresher course!

It should be a simple, yet effective experiment and/or reminder, don’t you think?

Wouldn’t it be great to suddenly start seeing people in the medical profession wearing two left shoes?

Just sayin’!

Are Invisible Illnesses Really Invisible?

“But, you look great!”

“I heard about this diet that cures everything!

“You don’t look sick!” 

“You’re here today, so you must be getting better!”

“Think more positively!”

Invisible PainInvisible illnesses come in all forms… Autoimmune, musculoskeletal and neurological only top the list of invisible illnesses and diseases that people live with on a daily basis.

Unfortunately, there’s not enough money for commercials with cute puppies and Clydesdale horses to be able to raise awareness about what an invisible illness truly entails, let alone a cure for it. Besides, the commercials that are already on television showing people smiling while they are taking their medications are total malarkey. They show people hiking, playing tennis, having fun. They don’t show that people are actually more concerned about the side effects of said medications (which for some reason, bigger, badder side effects including death can happen when taking some of these medications); and whether they are the lesser evil to the “possible” cure.

Sure, pharmaceutical companies are making billions of dollars on medications – but a cure?  Probably not in our lifetime… At least we’re consistently given hope that we are close to cures for everything under the sun though. But red tape and controversies make a mess of something that should be really simple – helping people get better.

So you might be asking; what is an “invisible illness”?  Well, like the term states, you can’t actually see the damage that an illness or disease is causing on a daily basis, hence the term “invisible”. Unless we actually tell you what is going on, you have no idea the amount of symptoms we are dealing with – and even then it doesn’t ever quite cover it. The damage is happening right in front of you though – and the pain is very real. Pray that you don’t have to see when we experience a sudden flare and need medical attention (get us to the hospital fast if you do… no stopping for soda refills, please).

An invisible illness can have some of the following on a daily basis:

  • Sharp, Stabbing, Dull, Achy, Electric, all over pain
  • Fatigue – Wears out easily performing simple tasks, or need for rest/sleep often; weakness
  • Memory Loss/Cognitive Issues
  • Depression
  • Vision/Hearing Disturbances
  • Balance/Mobility/Speech Issues – Some people may even appear drunk
  • Concentration/Decision Making Issues
  • Migraines and Severe Headaches
  • The lists goes on… GOOGLE it!

Have you ever had the flu? During the time you are sick every muscle hurts, your head hurts, you just want to slide under your covers and sleep until you feel better, right? Well, with a chronic illness we don’t ever get over our “flu”. If we’re really lucky though, we can go into a remission (it’s pretty rare, but it can happen); and that is a word that everyone with a chronic illness longs to hear.

Because our “flu” basically lasts forever, we need more time to get simple tasks done (if we’re lucky to be able to do them at all that day), or we might even need someone to take over those tasks for us once in awhile because we’re not able to do them. People living with a chronic illness constantly needs to take into consideration whether we’re capable of doing a simple task, and even how much pain and energy it’s going to take to get it done.

A lady named Christine Miserandino wrote a story about how she explained what it was like for her living with Lupus. In her story, The Spoon Theory, she explains to her best friend what a day is like by handing her a stack of spoons at a restaurant. She eventually starts taking them away one by one after performing the simplest of tasks like brushing her teeth and combing her hair. It wasn’t long before her friend was coveting her spoons, and ended up with a fairly good idea what it was like to live with a chronic illness. People all over the world now embrace the term “Spoonie”, almost as if we’re in some sort of club or something just because we’re chronically ill.

As poorly as some (healthy people) think we may be doing, we all want you to know that we are still the same person we were before we got sick… It’s not easy for us to admit that we can’t do everything that we used to be able to anymore; and it’s even harder to accept that this is our new reality; but the one thing we all strive to hold on to is the person who we were before we got sick.

So, if you know someone that has been diagnosed with a chronic illness, or someone that is still fighting for a diagnosis, know that since we are with you today means that we are trying really hard to show you how much we care (even if it’s happening only via social media – because for some of us, that’s the only way we are able to communicate). Even more so, know that if we managed to spend some quality time together or even go out to an event, it took every “spoon” we had to do it… We may not have as many available tomorrow (if we didn’t already borrow some from the day before), but it’s worth all of our spoons to spend our time with you today.

After hearing what I had to say, you tell me…  Is an illness really invisible or not?

Caregiving Overload

Handshake caregiversBeing sick we have to re-learn everything that we were from the time we were little. In my instance, after a bout of “viral” meningitis (and a long list of illnesses that weren’t diagnosed until years later), I personally had to relearn to do things that I thought were simple to me when I was healthy. Doing house chores of any type became near impossible, and balancing the books and working literally burned up in a blaze of not so much glory. My bed became my mainstay, and my body was happy enough as long as I limited my movements–but still kicks up often to make sure that I was still alive… Often. Social life?  That’s a long story; some good, some bad.

Living with a chronic illness we have to work ten times harder just to do the simplest of tasks. Because of such we tend to appear lazy and useless; even to our families. We lose our careers and friends; and worst of all, our dignity. For those that live with incontinence issues, neurologic issues, mobility issues, chronic pain and more, I’m sure you know what I mean.

We all expect that type of change to happen when we’re 80 or 90, but when you’re in the prime of your life, it’s a lot tougher to adjust.

If you were thrust into a world that you were not used to, how would you handle someone taking over your life because you weren’t able to do the things that are necessary to live independently, yet your spirit is still strong? What if you were suddenly thrust into a single income situation with your family, changing the entire dynamics of everything you fought to earn your entire adult life?

By being thrown into the “no-income-burden-of-the-family” status, our lives take an even more death-defying tailspin that seems to never end–and illness is the bully that just keeps kicking while you’re down.

How would you feel if your family started making decisions without you, planned holidays and events without including you in the preparation (or only allow you limited say)–even though they know that they are taking things away from you that you hold near to your heart… But it would just be easier (and quicker) to do it their way? What if they don’t want to follow your traditions or dreams any longer because it takes you too long, in their opinion, now that you are sick?

Should your family start making so many decisions for you to the point that all of your traditions, plans or dreams are shelved just because you aren’t able to move as quickly as you once did?

How would you feel if it was happening to you? How much independence, respect and even dignity would you expect to be able to keep if you ever became ill?

Don’t take it the wrong way, I truly appreciate the fact that my loved ones do what they can to help get things done. But chronic illness has taken away so much in my life that I still want to keep the things that it hasn’t been able to take away… Even if it’s something like holiday traditions. Yes, cooking an entire meal has proven harder and harder for me each year–but knowing that my family enjoyed my homemade creations makes every moment of pain, fatigue and nausea (and the week of recovery time) worth it to me.

Yes, I’ve become a lot slower, but I’m still me.

Depression Causes, Risks, and What Not To Say To Someone Living With It

Causes and Risk Factors For Depression

  • Loneliness
  • Lack of social support
  • Recent stressful life experiences
  • Family history of depression
  • Marital or relationship problems
  • Financial strain
  • Early childhood trauma or abuse
  • Alcohol or drug abuse
  • Unemployment or underemployment
  • Health problems or chronic pain

Make Healthy Lifestyle Changes

Lifestyle changes are not always easy to make, but they can have a big impact on depression. Lifestyle changes that can be very effective include:

  • Cultivating supportive relationships
  • Getting regular exercise and sleep
  • Eating healthfully to naturally boost mood
  • Finding an enjoyable hobby
  • Managing stress
  • Practicing relaxation techniques
  • Challenging negative thought patterns

What are the types of depression?

Depression comes in many shapes and forms. The different types of depression have unique symptoms, causes, and effects. Knowing what type of depression you have can help you manage your symptoms and get the most effective treatment.

Major depression

Major depression is characterized by the inability to enjoy life and experience pleasure. The symptoms are constant, ranging from moderate to severe. Left untreated, major depression typically lasts for about six months. Some people experience just a single depressive episode in their lifetime, but more commonly, major depression is a recurring disorder. However, there are many things you can do to support your mood and reduce the risk of recurrence.

Dysthymia (recurrent, mild depression)

Dysthmia is a type of chronic “low-grade” depression. More days than not, you feel mildly or moderately depressed, although you may have brief periods of normal mood. The symptoms of dysthymia are not as strong as the symptoms of major depression, but they last a long time (at least two years). These chronic symptoms make it very difficult to live life to the fullest or to remember better times. Some people also experience major depressive episodes on top of dysthymia, a condition known as “double depression.” If you suffer from dysthymia, you may feel like you’ve always been depressed. Or you may think that your continuous low mood is “just the way you are.” However, dysthymia can be treated, even if your symptoms have gone unrecognized or untreated for years.

Bipolar Disorder: When Depression is Just One Side of the Coin

Bipolar disorder, also known as manic depression, is characterized by cycling mood changes. Episodes of depression alternate with manic episodes, which can include impulsive behavior, hyperactivity, rapid speech, and little to no sleep. Typically, the switch from one mood extreme to the other is gradual, with each manic or depressive episode lasting for at least several weeks. When depressed, a person with bipolar disorder exhibits the usual symptoms of major depression. However, the treatments for bipolar depression are very different. In fact, antidepressants can make bipolar depression worse.

Seasonal affective disorder (SAD): When winter brings the blues

While the onset of winter can cause many of us to experience a drop in mood, some people actually develop seasonal depression, otherwise known as seasonal affective disorder (SAD). SAD can make you feel like a completely different person to who you are in the summer: hopeless, sad, tense, or stressed, with no interest in friends or activities you normally love. While a less common form of the disorder causes depression during the summer months, SAD usually begins in fall or winter when the days become shorter and remains until the brighter days of spring or early summer.

The cause of your depression helps determine the treatment

Understanding the underlying cause of your depression may help you overcome the problem. For example, if you are depressed because of a dead end job, the best treatment might be finding a more satisfying career, not taking an antidepressant. If you are new to an area and feeling lonely and sad, finding new friends at work or through a hobby will probably give you more of a mood boost than going to therapy. In such cases, the depression is remedied by changing the situation.

Ask for help and support

If even the thought of tackling your depression seems overwhelming, don’t panic. Feeling helpless and hopeless is a symptom of depression—not the reality of your situation. It does not mean that you’re weak or you can’t change! The key to depression recovery is to start small and ask for help. The simple act of talking to someone face to face about how you feel can be an enormous help. The person you talk to doesn’t have to be able to fix you; he or she just needs to be a good listener.

Having a strong support system will speed your recovery. Isolation fuels depression, so reach out to others, even if you feel like being alone or don’t want to feel like a burden to others. The truth is that most people will be happy that you chose to confide in them; they’ll be flattered that you trust them enough to open up. So, let your family and friends know what you’re going through and how they can support you.

Be concerned if your loved one…

  • Doesn’t seem to care about anything anymore.
  • Is uncharacteristically sad, irritable, short-tempered, critical, or moody.
  • Has lost interest in work, sex, hobbies, and other pleasurable activities.
  • Talks about feeling “helpless” or “hopeless.”
  • Expresses a bleak or negative outlook on life.
  • Frequently complains of aches and pains such as headaches, stomach problems, and back pain.
  • Complains of feeling tired and drained all the time.
  • Has withdrawn from friends, family, and other social activities.
  • Sleeps less than usual or oversleeps.
  • Eats more or less than usual, and has recently gained or lost weight.
  • Has become indecisive, forgetful, disorganized, and “out of it.”
  • Drinks more or abuses drugs, including prescription sleeping pills and painkillers.

If your friend or family member resists getting help for depression:

  • Suggest a general check-up with a physician. Your loved one may be less anxious about seeing a family doctor than a mental health professional. A regular doctor’s visit is actually a great option, since the doctor can rule out medical causes of depression. If the doctor diagnoses depression, he or she can refer your loved one to a psychiatrist or psychologist. Sometimes, this “professional” opinion makes all the difference.
  • Offer to help your depressed loved one find a doctor or therapist and go with them on the first visit. Finding the right treatment provider can be difficult, and is often a trial-and-error process. For a depressed person already low on energy, it is a huge help to have assistance making calls and looking into the options.
  • Encourage the person to make a thorough list of symptoms and ailments to discuss with the doctor. You can even bring up things that you have noticed as an outside observer, such as, “You seem to feel much worse in the mornings,” or “You always get stomach pains before work.”

The risk of suicide is real – What to do in a crisis situation

If you believe your loved one is at an immediate risk for suicide, do NOT leave the person alone.

In the U.S., dial 911 or call the National Suicide Prevention Lifeline at 1-800-273-TALK.

In other countries, call your country’s emergency services number or visit IASP to find a suicide prevention helpline.

It may be hard to believe that the person you know and love would ever consider something as drastic as suicide, but a depressed person may not see any other way out. Depression clouds judgment and distorts thinking, causing a normally rational person to believe that death is the only way to end the pain he or she is feeling.

When someone is depressed, suicide is a very real danger. It’s important to know the warning signs:

  • Talking about suicide, dying, or harming oneself
  • Preoccupation with death
  • Expressing feelings of hopelessness or self-hate
  • Acting in dangerous or self-destructive ways
  • Getting affairs in order and saying goodbye
  • Seeking out pills, weapons, or other lethal objects
  • Sudden sense of calm after a depression

If you think a friend or family member might be considering suicide, talk to him or her about your concerns as soon as possible. Many people feel uncomfortable bringing up the topic but it is one of the best things you can do for someone who is thinking about suicide. Talking openly about suicidal thoughts and feelings can save a person’s life, so speak up if you’re concerned and seek professional help immediately!