Correction

May8

Yesterday, I said that Ram Meyyappan was a disability advocate at Social Security Disability Help and that bears clarification. I misrepresented him; Ram is not an advocate or an attorney. Instead, he is the the writer, editor and manager of their website,  Social Security Disability Help.

That said, Ram knows a fair amount about Social Security Disability and the application process because he’s written so much about it and is in charge of a website about it. If for some reason, there is something that he doesn’t know, I’m sure he’ll know how to find the answer.

Social Security Disability Help does have a network of over 200 attorneys who do FREE evalations about eligibility. If there are any questions to which you’d like an answer, please fill out their contact form . or you can contact them using the Contact Me form. See you in a few weeks, Ram!

Introducing Ram’s Disability Corner

May7

Today, I’d like to introduce a member who will regularly contribute to a new section to our site, Ram Meyyappan; disability expert and advocate from  Social Security Disability-help.org , to which I will also add occasional articles. Ram will write an article every few weeks and I’ll supplement with information on Social Security Disability as I learn it. This is our first ‘installment’ about Social Security Disability and as such, it is quite generalized and abbreviated. But, we have our own EXPERT advocate. If you have particular questions, why not fill out the Contact Me form and I’ll forward your particular question to Ram-or if I can answer it, I will. 

I’d like to say that the best place to get information about Social Security is either from his website or from the ‘horse’s mouth’ at Social Security.  Yes, there are many creditable sites, but why not stick with tBut for ‘starters’ these are a few things that Ram would like to point out, especially for the person who has little experience with Social Security Disability and how to file for it:

 How to File an Application for Social Security Disability (SSD) Benefits 

Social Security Disability benefits are meant for individuals who are out of work due to a long-term disability. There are three ways to begin your SSD application:

  • Contact the SSA via their main helpline at 1-800- 772-1213,
  • Call your local SSA office to make an appointment to complete your application in person,
  • Or, visit the SSA’s website (http://www.socialsecurity.gov/pgm/disability.htm) to immediately begin your application.

Whether you complete your application online or in person with the SSA, there are three forms required:

Additional forms may be required by the SSA as well, in order to evaluate the extent of your symptoms and your physical and mental limitations, as well as the effect that these factors have on your ability to perform everyday tasks, including typical job functions. If more information is needed, you will receive direct requests from the SSA to complete other forms or to submit additional documentation.

It is also important to note that medical documentation makes up a great deal of the proof of your disability and is an essential requirement for the SSA to make a determination on your SSD claim. You should submit any and all medical documentation you have, and ensure you provide thorough information on your SSD application forms about all of the medical providers from whom you have received treatment.

If you do not want to go through the process alone, you can hire a disability attorney or advocate to help you with the application.

Article by Ram Meyyappan

www.disability-benefits-help.org

Also, a list of disabling conditions and the documentation needed to apply for each condition as a potential disability can be found here

Acknowledgements and thank-yous!

May6

Today I woke to see that I’d been recognized as ‘blogger for the day’ by another lupus blog,  “Lupus the Adventure Between the Lines.”  Now, I’d always liked this blog and always followed the Benylsta infusion progress, and when I was able, made a pilgrimmage.’

But the operative phrase was, “WHEN I WAS ABLE.”  I don’t routinely go that extra mile, take that extra step to acknowledge another blog. I decided today, that I’d end that ‘practice’-or lack thereof!

Obviously, I’d like to thank “Lupus Adventurer,” who took action and brought my blog to the attention of others; but I’d also like to thank the person who a long time ago had faith that I could put together a word or two to make a sentence, and then a cogent thought to make an article; an editor from the past, Terri Metules RN. Terri and I no longer work together, but Terri taught me the basics of writing style (I had sytle?) and gave me encouragement that I could express myself in a way that was entertaining and still factual.

So, on this celebration of National Nurse’s Day, I honor two people, “Lupus Adventurer” and Terri Metules for very different reasons. Between all the readers and all the bloggers out there, we’ll beat this thing called LUPUS!!

 

Lupus can involve the Nervous System

May6

No discussion of lupus and the havoc it wrecks on the human body would be complete without discussing lupus and our nervous systems. Since lupus can affect all organs and systems, our nervous system are also ‘targets.’

Our nervous systems are complex, so, I’ll divide then into 3 component parts. There is the peripheral nervous system which governs our arms and legs and feet. It contains a network of nerves that work to connect our brain (Central Nervous SYstemO with the rest of our body, sending messages to the rest of our body as to how to act or react to stimuli.

The Autonomic Nervous System, (ANS)  or involuntary nervous system controls thins like our heart rate, respiratory rate, how much we sweat. It has any number of functions. Basically, our autonomic nervous system acts independently of us. Think of it, if we had to have a discsusion with our automatic system EACH time our heart was taxed and we had to convene a Congress of what to do about it,  the threat would have already passed and the reaction to this would have been an Intricate Lee. very ineffectively. So, the Autonomic Nervous System does the work for us on ‘auto’pilot’

Lastly there is the Central Nervous System. The Central Newvous System  (CNS). Ir is comprised of the nerves in the brain and spinal cord. When the nervous system of people who have lupus is affected, people experience ugh a wide variety of symptoms which I’ll try to break down to systems. The effects that lupus has on the CNS are the most known, but not always the most devastating.

When lupus affects the Central Nervous System,  people may experience headaches, confusion, fatigue or depression. You might also see stroke, cognitive problems, vision difficulties and mood swings. Those are pretty vague symptoms and could be caused by a variety of conditions, so if you have these symptoms, you’ve likely had at least one physician question your mental status. CNS involvement can be a difficult diagnosis to make because often the symptoms are vague. But CNS lupus can present with CNS vasculitis, a potentially life-threatening medical emergency.

When lupus affects the Peripheral Nervous System, numbness and tingling or other different sensations may manifest in your arms and legs. There can also be ringing in the ears (even though tit was told to me, that “you’ll get used to it” and it was just a temporary nuisance. 15 years later, though, it progressed into a permanent, rip-roaring buzz-saw present 24/7, that nothing can be done about.

Last, but not least is involvement of the Autonomic Nervous System. What symptoms may be seen? Inflammatory  symptoms of organs that are heavily innervated automatically. For example, the heart rate, instead of being strong and regular, may be weak and irregular.. If that’s the case, you’d see confusion, because the brain relies on a regular flow of blood-carry oxygen, WHICH IT IS NOT GETTING. There might be numbness or burning for the same reasons.  Probably the example of ANS involvement of which we’re familiar, is in Raynaud’s phenomenon.

Lupus and osteonecrosis

May2

Several weeks ago, I published a post (“The Stages of Osteonecrosis”) that unintentionally misled. I was told that I had inferred that lupus caused osteonecrosis; a rare, debilitating, bone disease. Lupus does NOT cause osteonecrosis.

However, while lupus does NOT directly cause osteonecrosis (ON), often referred to as avascular necrosis (AVN); treatments for lupus and a side effects of lupus INDIRECTLY contribute to the development of osteonecrosis.

To what treatment am I referring?  I spoke of the treatment of lupus with steroids; usually, very successfully so. But, the effectiveness of steroids doesn’t come without a price. A percentage of lupus patients who are treated with steroids, develop osteonecrosis. Not because of their lupus, but because of the steroid treatment. This is also true when asthmatic patients are treated with steroids. A fair percentage of them develop ON because the treatment for asthma attacks is often with steroids.

Steroids (PrednisoneTM, Solu-medrolTM) and their cousins, while life-saving in most instances, have been shown to cause of osteonecrosis. It is theorized that steroids can interfere with fat metabolism causing the formation of fatty clots. It is these clots that obstruct blood flow to the bone, causing bone infarcts or ON. 

To what side effect was I referring? Some lupus patients develop the clotting disorder, Antiphospholipid Syndrome. People with APS have an increased risk of a blood clot.  This is one reason that lupus patients are at higher-risk during their pregnancies. A clot in the umbilical cord can result in miscarriage.

Again, lupus itself doesn’t cause these clots which can result in ON/AVN, but antiphospholipid syndrome is a result of lupus and IT causes the clots. The person with antiphospholipid syndrome often needs anti-coagulation therapy for life. 

I apologize to those readers who may have been confused. I don’t claim to speak all facts correctly, and thank you to the reader who informed me that he was confused.

Life with a chronic illness; don’t let it be a losing battle!

Apr20

I watched this, my curiosity piqued because in ‘the day,’ I did several triathlons. But, not today! Surely, he jests! Surely, he’s not suggesting that I get ‘back in the saddle again; and how dare he cast aspersions because I’m not climbing back up on that horse!’

I had it in my mind to tell that ‘whipper-snapper’ a thing or two. I was prepared with my list of things that most people with chronic illnesses deal with ‘day in and day out,’ things that would make his head spin; then, it crossed my mind that I don’t know half of his world. For all I know, he’d faced his share of challenges, but they weren’t physical. Possibly emotional.

Still, I took his words too personally and felt that he directed the video commentary at people who don’t do as much as he does. Many say that anyone who is on the government ‘dole’ is lazy and there are some who think/say, “Stop feeling sorry for yourself and spend that time thinking of ways in which you can accomplish Ironman triathlons.” Remember his admonition, “what the mind perceives, the body can achieve.”

Then I realized the full import of what he was saying: we may have limitations, but all of us ought to  try to do something bigger than ourselves. Most of us will never do a triathlon, let alone the Ironman. We ought to set goals, but not set them so high that they can’t be achieved, but we ought to make goals. They should be realistic and attainable goals. He was saying DO all that you’re able to do and don’t plan on llife’s being a losing battle. 

Yes, we ought to set goals, but they need to be, for sanity’s sake, reasonable and attainable and we must not forget that life is a long road. Above all, the road to those goals should be fun.

The Stages of Osteonecosis

Apr6

April 06, 2013

A post about stages of osteonecrosis (a complication of lupus), needs an introductory explanation of WHAT osteonecrosis-or avascular necrosis-is. Basically, osteonecrosis is the condition that results when the blood supply to bones is cut off, often by a tiny blood clot caused by lupus. Lupus can cause tiny blood clots to  form, and therefore, this is a complication of this autoimmune disease.

THE FOLLOWING IS REBLOGGED FROM Osteonecrosis.me:

“Stages of Osteonecrosis (Avascular Necrosis)

Osteonecrosis (Avascular Necrosis) is classified in stages referring to how far the disease has progressed. There are the Ficat and the Steinberg Classification systems. Most orthopedic doctors use the Ficat classification system to determine at what stage your disease is. The stages are as follows:

Stage I: 

  • X-Ray: ON (AVN) is not detectable.
  • MRI: there might appear slight bone marrow edema or joint effusion. Joint effusion most commonly appears in the knees.
  • Bone Scan: evidence of increased uptake. Increased uptake is mainly due to increased activity of osteoblasts (cells responsible for bone formation) associated with new bone formation, and to a lesser degree by increased blood flow to bone. Increased uptake is an indication that there might be a tumor, fracture or infection.

Stage II:

  • X-Ray: mixed osteopenia, a condition where bone mineral density is lower than normal, or evidence of sclerosis.
  • MRI: evidence of lesion; an abnormality in bone tissue.
  • Bone Scan: increased uptake (see note above).

Stage III:

  • X-ray & MRI: bone collapse of joint appears imminent.

Stage IV:

  • X-ray & MRI: collapse of joint.
Image taken from the Journal of the American Academy of Orthopaedic Surgeons

To learn more click here: Ficat Classification and Steinberg Classification

A lot of websites, talking about Ficat Classification, refer to the level of pain at each stage of the disease. One indication of early ON (AVN) in the hips is pain in the groin. However, it appears to me that the pain differs from one ON (AVN) sufferer to another. My ON (AVN) is in my distal femurs and the first time I felt pain was in my knee caps.  As the disease worsened the pain ran like hot rods up and down my thighs.Take into account that every body is different.”