Lupus? no. “YOUR STORE FOR HOME DECOR”

Jun16

In today’s post I’ll show you what has occupied my time while I’ve been ‘Missing In Action’ a lot lately. For a long time, others encouraged me to develop hobbies to have an outlet from boredom or a stress release ‘on a rainy day;’ but did I listen to their advice? Not UNTIL NOW. As time went on, working on the internet, developing webpages and studying marketing became more than a hobby for me, so now a longtime dream has come true!. I’ve always wanted to have an internet store: HERE IT IS!!

This was a pretty hard sell for me. I’m particularly good at telling others that they might want to consider having an avocation to take their minds off of the fact that there are things they can’t do because of their lupus, or to reinforce their self-esteem when they succeed. ‘WHAT THE MIND PERCEIVES, THE BODY CAN ACHIEVE;’ on July 15, 2013, I open the doors to: http://yourhomegoods.com ’Your Store for Home Decor.’

The Solvency or Insolvency of Social Security and Medicare

Jun6

I was a bit overwhelmed and humbled as I read this. It seems to be a non-partisan treatment of the threats to the survival of Social Security and Medicare, 2 programs that many of us rely on. Sure, the numbers have been flying around like fur, but these seem to be cold , had, undeniable facts. And, sure, there’s someone out there who is a naysayer, but I’m inclined to believe a good part of this, and it downright puts a bit of reality on my denial table today. Without further ado, a recently published article from the Christian Science Monitor:

 

Social Security and Medicare: time running out to fix them, trustees say (via The Christian Science Monitor)

Copyright ImageClick to View Health and Human Services Secretary Kathleen Sebelius (c.) accompanied by Treasury Secretary Jacob Lew (r.) and Acting Labor Secretary Seth Harris speaks about Social Security and Medicare on Friday at the Treasury Department in Washington. The government says Medicare’…

Beware; your Medication can be harmful!

May30

Because I’m a nurse, I may have a bit of ‘inside’ knowledge about things health-care related and medications is one of those subjects. 

Admit it; we’re going older. All  we need to do is think of what we were doing 10 years ago and compare the two times; it is likely that we take more medication than 10 years ago, our hair is grayer; I know, only your hairdresser knows for sure…”

Because we’re getting older, there are likely more health challenges, even though they may require only one pill a day. When I read this article, I was reminded of the fact that twice a week, I congregate with other seniors, who may have run into problems, simply because they’re not always taught what their condition is; or if they’re taught, they don’t always retain the information. Most prescribers do teach patients, but often, seniors are too intimidated by physicians that they’re afraid to ask questions if they don’t understand. I know that this has prevented seniors from getting needed drug therapies. Hopefully, pharmacists can offer that ‘last line of defense’ and answer questions that patients need.

Having a chronic illness provides some of us with a silver lining to that chronic illness-cloud; we likely know the medications we are prescribed and undestand the reasons for them.

 

Medicare Drug Programs Put Seniors and Disabled at Risk (via SBWire)

Medicare drug program doesn’t monitor prescribers San Francisco, CA — (SBWIRE) — 05/24/2013 — An investigation by ProPublica has found that the Medicare program, while it does a great job of making sure elderly and disabled members get the medication they need, it does not monitor who prescribes…

Medicare Drug Programs Put Seniors and Disabled at Risk (via SBWire)

Medicare drug program doesn’t monitor prescribers San Francisco, CA — (SBWIRE) — 05/24/2013 — An investigation by ProPublica has found that the Medicare program, while it does a great job of making sure elderly and disabled members get the medication they need, it does not monitor who prescribes…

Disability by States

May26

It may be that the inclusion of the date, blocks out 2 important letters: ST in STATES in the article below. That said, this article caught my eye and and I thought I’d pass it on to you. I was interested because I receive disability benefits and my husband, unemployed, is always following the unemployment numbers as they are released monthly.

 

States with Most Americans on Social Security Disability Insurance (via SBWire)

The number of Americans on SSDI has doubled in the past two decades San Francisco, CA — (SBWIRE) — 05/24/2013 — By the end of 2011, The number of Americans who receive Social Security Disability Insurance has more than doubled since 1991, from 5.2 million to close to 11.7 million claiming disability…

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.