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What is lupus?

discover your power“Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). ” I ‘borrowed’ this definition of lupus (Systemic Lupus Erythematosous) from the website of the Lupus Foundation of America which deals with every aspect of this disease (lupus) that could be thought possible.

It needs to be said that there are fine organizations which conduct research for, use donated revenues for education of, gather information about and educate about lupu. There is the Lupus Foundation of America, the Lupus Research Initiative and the Alliance for Lupus Research.  and including, but not limited to many educational sites such as Molly’s Fund, The Lupus Chick, Sometimes it is Lupus. this site: The Lupus Guru and Lupus, The Adventurer Between the Lines. Space limits the # of sites I can mention, but suffice it to say that the above blogs and websites frequently update their content and all make attempts to maintain an upbeat, updated presence on the internet.

So, what is lupus? You’ll find more thorough explanations on the sites listed above and as I post more on these pages, but-what follows is a short video presentation s which is accurate and if you need to have an explanation of what lupus is for concerned friends and family members because you’ve just been diagnosed with lupus, YouTube is incredibly accurate with this video!

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Winning Social Security Disability Benefits When You Have Lupus

This guest blog is from the Chicago Social Security Disability Lawyers at Nash Disability Law.

Lupus is an autoimmune disease that can affect any part of your body. Suffering from chronic lupus can affect your day-to-day life in a major way. If it affects your ability to work, you may qualify for Social Security Disability benefits.

But winning disability benefits is never an easy task. You must prove that your lupus symptoms will prevent you from working for at least one year. On top of proving your disability, you have to deal with doctors, complicated laws and just trying to make ends meet in your life.
If you do suffer from lupus and can’t work, you should contact a disability lawyer for help getting disability benefits

Proving You Have Lupus to the Social Security Administration
The Social Security Administration (SSA) includes lupus on its official listing of impairments. But to qualify as disabled, you must meet the following criteria:

1) Your lupus symptoms must affect at least two body systems or organs.
2) Your symptoms must include two of the following:
a. Exhaustion resulting in decreased mental or physical activity
b. Involuntary weight loss
c. Fever
d. Feelings of illness or discomfort leading to low physical or mental activity

OR

1) Your symptoms are repeated and include at least two of the symptoms above and affect your:
a. Day-to-day life activities
b. Maintaining of social functionality
c. Completing tasks because you can’t keep focus
2) Your limitation must interfere with your ability to function on a variety of levels including, but not limited to, your job.

Proving anything to the SSA is complicated, but as you can see, lupus comes with its own set of rules. If you suffer from lupus and think you may qualify for disability benefits, it’s worthwhile for you to consult with a disability attorney to find out if you have a case.

Finding the Right Medical Evidence to Prove a Lupus Listing
To make sure you’ve been correctly diagnosed with lupus and that you “meet” the SSA’s listing requirements, the Administration follows the guidelines as outlined in the current Criteria for the Classification of Systemic Lupus Erythematosus, by the American College of Rheumatology.
These guidelines include 11 criteria used to determine if you have lupus. Of the 11, you must have four to receive a lupus diagnosis. These criteria include:

• Oral ulcers
• Photosensitivity
• Sersitis
• Renal Disorder
• Malar Rash
• Antinuclear Antibody
• Discoid Rash
• Arthritis
• Hematologic Disorder
• Neurologic Disorder
• Immunologic Disorder

You must prove you have four of these symptoms with proof from doctor evaluations, blood tests or other medical test as administered by a medical professional.
To help prove your lupus to SSA, consider working with a Social Security Disability attorney like the ones at Nash Disability Law in Chicago. To learn more, call 312-443-0900.

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Interview with Dr. Donald Thomas-lupus and Sjogren’s Syndrome

Comprehensive, yet easily understandable, this interview with Dr. Donald Thomas, M.D. discusses 27 secrets to living a better life with lupus and other and other autoimmune diseases. His book, “The Lupus Encyclopedia” needs to be in the library of every lupus patient.

Continue reading

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Winning Social Security Disability Benefits When You Have Lupus

tom_nash_chicago_disability_lawyer

This guest blog is from the Chicago Social Security Disability Lawyers at Nash Disability Law.

Lupus is an autoimmune disease that can affect any part of your body. Suffering from chronic lupus can affect your day-to-day life in a major way. If it affects your ability to work, you may qualify for Social Security Disability benefits.

But winning disability benefits is never an easy task. You must prove that your lupus symptoms will prevent you from working for at least one year. On top of proving your disability, you have to deal with doctors, complicated laws and just trying to make ends meet in your life. If you do suffer from lupus and can’t work, you should contact a disability lawyer for help getting disability benefits

Proving You Have Lupus to the Social Security Administration
The Social Security Administration (SSA) includes lupus on its official listing of impairments. But to qualify as disabled, you must meet the following criteria:

1) Your lupus symptoms must affect at least two body systems or organs.
2) Your symptoms must include two of the following:
a. Exhaustion resulting in decreased mental or physical activity
b. Involuntary weight loss
c. Fever
d. Feelings of illness or discomfort leading to low physical or mental activity

OR

1) Your symptoms are repeated and include at least two of the symptoms above and affect your:
a. Day-to-day life activities
b. Maintaining of social functionality
c. Completing tasks because you can’t keep focus
2) Your limitation must interfere with your ability to function on a variety of levels including, but not limited to, your job.

Proving anything to the SSA is complicated, but as you can see, lupus comes with its own set of rules. If you suffer from lupus and think you may qualify for disability benefits, it’s worthwhile for you to consult with a disability attorney to find out if you have a case.

Finding the Right Medical Evidence to Prove a Lupus Listing
To make sure you’ve been correctly diagnosed with lupus and that you “meet” the SSA’s listing requirements, the Administration follows the guidelines as outlined in the current Criteria for the Classification of Systemic Lupus Erythematosus, by the American College of Rheumatology.
These guidelines include 11 criteria used to determine if you have lupus. Of the 11, you must have four to receive a lupus diagnosis. These criteria include:

• Oral ulcers
• Photosensitivity
• Sersitis
• Renal Disorder
• Malar Rash
• Antinuclear Antibody
• Discoid Rash
• Arthritis
• Hematologic Disorder
• Neurologic Disorder
• Immunologic Disorder

You must prove you have four of these symptoms with proof from doctor evaluations, blood tests or other medical test as administered by a medical professional.
To help prove your lupus to SSA, consider working with a Social Security Disability attorney like the ones at Nash Disability Law in Chicago. To learn more, call 312-443-0900.

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Plan to raise awareness!

lupus.org

 This May, across the country and around the globe,, there will be seminars, classes, walks and runs to raise awareness of lupus. Many peyote have not heard of lupus, the disease our immune systems that we deal with daily, sometimes hourly.  If we don’t deal with it, it deals with us!! Right now, lupus is largely known as an orphan disease, because few people know if it, or what they know can be measured in a thimble.

Our goal needs to be to raise awareness of lupus, so people no longer assume (incorrectly so), that “you don’t look sick! We want to raise awareness, not so others feel sorry for our illness, but so that dollars are donated and spent on research; RESEARCH TO FIND A CURE!

So, even though this notification more than 4 months before lupus awareness month cthis May, there is no time like the present to begin planning for the future! Remember, we raise awareness all year long, 365/7, but there is a concerted effort and push made in May. Stay tuned to this and all lupus blogs and newspapers for up to date coverage and this year, BECOME INVOLVED.!

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An interview-WITH ME!

By Maria Mongiardo
Annie is sixty-two and lives with her husband, Rey, in Colorado. Over the years, she was diagnosed with epilepsy, secondary Sjogren’s syndrome, fibromyalgia, lupus, and now complication of these. She has her own lupus blog called The Lupua Guru – Her blog is for people looking for information and advice on lupus and caregiving. She has been living an extraordinary life and shares her inspiring story with us.
How was your diagnosis made?
First, I was first diagnosed with epilepsy at age twelve, but like any kid, I did not think I was ‘different.’ In ways I didn’t know then, that was the first time my life changed. My Father and Mother saw to it that all of my growing needs were met; also, I grew up in a small town with understanding and extraordinary classmates.
Then, one eve in my junior year my life changed forever-again: I was leaning over the tub to wash my hair, had a seizure and hit my head on the unforgiving porcelain as I lost control and suffered major third degree burns. Rumor has it, that my Father, every bit the attorney, grilled the plastic surgeon about his abilities to save my life. At that time, people usually did not survive burns that I had. It was not long after that that my parents arranged tutoring for me, since I had to miss so much school because of reconstructive surgery. Despite my burn scars, I went to the junior prom with the ‘big man on campus,’ class president, and football star of any gal’s dream.
Then, my life changed again when my Father died quite early in life and quite unexpectedly. (how many times can a life change?). I was too young to absorb the meaning of the loss of my father, though I eventually felt the impact and it became one of the greatest losses of my life. I had grown accustomed to more attention from Mom and all of a sudden that attention was rightly divided as she had the responsibility of raising and putting all of us through college.
Then my life changed again.I was diagnosed with Sjogren’s Syndrome while in college, when I had mumps a bit too regularly; an astute clinic physician diagnosed parotitis, a hallmark of Sjogren’s syndrome and referred me to ENT which confirmed After a lip biopsy and other tests a diagnosis of Sjogren’s was made when I was about twenty.
Mom took charge again and saw to it that the medications for epilepsy were changed because my seizures were not controlled. She wanted me to have the life that she and her husband had envisioned for me. Seizures stopped as soon as med changes were made and, boom! I went to nursing school, moved to Chicago and began to LIVE!
My life changed yet again when I was diagnosed with lupus in 2002. With this diagnosis, my rheumatologist explained that it was a mixed connective tissue disease, which knows no bounds as far as the complications I could experience, I was granted a full disability in 2003. We then moved to Virginia for a better job opportunity for my husband and refinished an old house. No sooner did the final coat of paint dry, than Rey called me and told me that he had lost his job. But another job opportunity awaited us in Colorado.
What is your support system like?
For many years I have had tremendous support from my husband who at times has had difficulty understanding what I have had to go through. But for the most part he has always been there as have several very close friends and family. But, it’s hard, because everyone has his/her own life. Part of my issues have been how I emotionally have had to deal with what others have thought of me. As I have gotten older those feelings have not subsided. So my support comes in spades from my tremendous husband and all the wonderful friends I have made along this journey called life.
What do you do for work now?
I co-moderate an online support group for osteonecrosis (avascular necrosis). I edit and review books, was a freelance writer for eight years for national nursing magazines and I have my blog at http://lupusguru.com where I use my background in nursing to discuss topics related to lupus and put them in words that are decipherable to the many who have lupus or the caregivers for someone with an autoimmune disease.
Anyone with chronic illnesses knows that keeping ‘ologists appointments, having regular diagnostic testing, filling medications and all the pressures of this, the physical therapy that may go along with this-can take up too much time or sometimes be a full-time job, making you feel like a perennial patient; not a good feeling!
Do you take any supplements?
I tried acupuncture, Chiropractic was minimally effective, special diets and counseling to get over the many losses I would experience in my life. Counseling was most effective until I found out that the counselor did not HAVE A LICENSE TO PRACTICE! I just tried started to try some essential oils, researched carefully by a nurse friend who knows of my medical condition. Massage only felt good for a short amount of time, but had no long lasting effects, so I am back to only medications.
How do you stay so positive?
I have some wonderful friends; and what is to be gained by being negative, anyway? One of my friends said to me once; “it’s okay to get on your ‘pity pot,’ once in a while;” but “you need to give it a statue of limitations.”
Has lupus affected your marriage?
Other than the recent financial problems, it has strengthened our bond. I was a real active, type A personality and Rey was a type B personality. Before we married, it was agreed that I would slow down a bit and he would pick his tempo up a notch. ! My having lupus has forced him to become closer to the type A mode, because he does all the shopping, all the cooking, most of the cleaning, yard and heavy work around the house: I’ve given him the honorary type A title! Those things (shopping cooking, cleaning, etc.) are things that I would normally do, that I used to be able to do, and would love to be able to do; and now, because I can only do them on a very good day. I feel less a woman, less of a wife. Men, please realize and understand that your wives may feel this, too.
Any advice for people who are married?
The advice I have is for couples who are considering marriage; think about those vows BEFORE you marry, and think how you would react if the ***t were to hit the fan. Really think about the “for better, for worse, in sickness and in health, forsaking all others, till death do us part” part. What if your caregiver got sick? What if you found yourself in the same boat as Rey and me? Claws can come out. During your marriage, something will, maybe not lupus, but something else, possibly more tragic or probably less tragic can happen. If you are not 100% sure that you’ll stick around, do not take the vows. It is not right, nor is it fair, nor is the LOVE real. Remember, it could be you who gets sick and needs help.
Do you have any advice for people with an autoimmune disease?
My advice for people who have an autoimmune disease is to hook up early with a good rheumatologist as soon as you can and learn as much as you can about autoimmunity. This does not need to be all-consuming, but can I suggest a few good reads? “The Lupus Book” A Guide for Patients and Their Families, “ “The Lupus Encyclopedia” by Donald E. Thomas MD and “In Your Own Hands” by Larry Berkelhammer, PhD. The last book is great reading for those who realize the power of the connection between the mind and the body, but ALL of the books are excellent and well sourced. On my these pages, soon, I’ll be writing a review of the 2 latter books.
Is there anything else you do to stay healthy?
I have become the worst at this. I always used to eat and sleep well when I was younger; well, sometimes I missed out on sleep when I partied too hard, but by and large, I was in good shape as a triathlete (Was I good? That doesn’t matter!).
I hooked up with a physician years ago who felt a strongly about the connection between the mind and the body, and it was in teaching one of his classes that I met my husband. But what do I do to stay healthy now? Not as much as I should; the caregiver in me makes sure the needs of others are met BEFORE I meet mine. I have learned how to tell my husband what makes up a well-rounded meal! I participate in “Silver Sneakers” classes, offered by many insurance companies. I know, that’s not enough, but I am also receiving physical therapy for an ankle replacement that I had last October 2013 that sort of precludes strenuous exercise.
Is there anything you specifically would like people on lupuschick.com to know about your fundraiser?
I would like people to know that we planned for our financial future BECAUSE we knew I did not have a great health history and because of my being a nurse, we had an idea of certain worst-case scenarios that could play-out. We knew complications could arise for which we’d need extra money. We planned for long-term care and thought we had most bases covered. But, as John Lennon said,‘ Life is what happens when you’re busy making other plans.’ We planed on unemployment for as long a year, but not three and a half years and we didn’t foresee bankruptcy!
The fundraiser we set up is on GiveForward, an organization based in Chicago. Their mission: to promote medical fundraising. We need to raise money for bills that relate to lupus, medications I take for lupus, Sjogrens and epilepsy and problems they can pose-or medications for them can pose. Our specific site is:
https://www.giveforward.com/fundraiser/xfl4/annie-s-autoimmunty-and-rey-s-move-fund
It is HARD is to appeal to you and to others who don’t know us for help. But, I know if the shoe were on the other foot I’d try my darndest to help others. There is something lupies do: we stick together! Can you help Rey and me start over by donating to our fundraiser? Can you forgo a dinner out, a night at the movies or a movie rental, a few lattes, and donate to our fund? We would be forever in your debt. We need money to pay for a move to where we think there will be more jobs and all relocation expenses, first months rent and security deposit. We know competition for jobs can be stiff; but at least there will be jobs. At our site, there is an online donation form, though, if you are uncomfortable with giving information online, contact me at anowlin7@gmail.com and I will give you my snail mail address. I NEVER thought I would be starting over at 62!
We’ve received donations from people we don’t know. That in itself is so heart-warming. that I don’t know how to express the feeling; but how do you write a ‘thank you’ note to someone you don’t know?
What would you like to see on a website such as lupuschick.com?
In addition to the tremoundously well-orgnized autoimmune/lupus and resource information, I would like to see a financial planning section and a WHY it is so important that people with lupus or another autoimmune disease plan for their financial future, no matter how big or small their income. I should think that CFPs would be only too happy to contribute and they might offer free consults. One last thing for all you lupuschick readers: plan, plan, plan, and revise that plan.
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Keeping our sunny side up is hard-can you help?

What is this thing on the right sidebar below my new logo?  It is a widget for our fundraiser. We planned for our financial future, but were bit in the butt, anyway. My out-of-pocket, lupus medical expenses AVERAGED $24,200 for two years in a row and at the same time, my husband lost his job.

Fast forward 3 1/2 years and Rey remains unemployed and we’ve touched the ‘untouchable’ IRAs so much that we’re near penniless, and filed bankruptcy a month ago. Our sole income is my disability check and part-time work that Rey finds. We’ll have to leave our home here in Colorado but don’t have the money to move. We had to so something besides feel sad: so besides trying to KEEP OUR SUNNY SIDE UP:

We established a fundraiser to raise money so we can move to where there may be work for Rey. though a medical fundraiser site called Give Forward (http://www.giveforward.com), an organization based in Chicago whose mission is to promote  fundraisers for people with medical needs; people unable to pay for cancer treatment, Boston Marathon victims who may have medical needs for the rest of their live, etc.

Rey and I need your help: If you are uncomfortable donating online, please complete the CONTACT ME form on the tabs above and I can provide an address. Bankruptcy and now asking for help are ‘cold prickles’ but the outpouring of love we’ve received on this journey is a’warm fuzzy!’ of life, Specifically our site is: here. Thank you for your consideration, prayers, hugs!  Annie and Rey.

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