But you don't LOOK sick ...

“Squeezing droplets of life between the crevasses of pain, illness & disabilities. But I don’t look sick ..."

PsA & AS: The Challenges of Sero-Negative Auto Immune Diseases

With a constellation of symptoms that rivals several chronic illnesses rolled into one, and blood work that frequently refuses to fit neatly into "the box," the auto immune conditions umbrellaed under "The Spondyloarthropathies," can be tricky to diagnose and equally as challenging to live with. There are many troublesome and less than lovely symptoms which accompany both conditions, but the pain associated with these auto immune diseases may be the most difficult to deal with on an everyday basis. And, just like the majority of equally mysterious auto immune diseases, it is not uncommon to find one's body under attack by one or more additional illnesses at the same time PsA and AS is invading the body. I have certainly found this to be true for myself, and it most definitely makes functioning and living with these conditions an enormous struggle. While I have had both illnesses reeking havoc in my body for at least 5 years, I was not officially diagnosed until the Spring of 2011. I am a pretty experienced patient with several other chronic conditions, but I have a lot to learn in relation to these diseases. My hope for this blog is to share my personal challenges and experiences with others who deal with Psoriatic Arthritis and Ankylosing Spondylitis, and hopefully gain new knowledge and support along the way.
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Tuesday, October 18, 2011

Getting Approved for Social Security Disability Benefits

The economy of both our own country, as well as countless other nations throughout the world, have been strained to a breaking point in the last few years. With this depressed state of being, and massive stress incurred, we witness a ripple affect within our communities, our government, along with the educational and medical systems, just to name a few. We have all been affected to some degree, whether it's radical and life altering, or on a lesser level, but, if you ask me, our society as a functioning unit has become quite the mess to behold and contend with. I would like to venture to make a simple comparison, and say that our present and recent past state of being, is similar to that of a necklace chain, a chain which was once untangled, shiny, and streamlined, but now is a knotted mess. Long story short, we have a lot of "untangling" to do so that we may once again wear that necklace. When one steps back and takes inventory of our countries' many "knotted necklaces," it's very clear that many of our systems do not work as well as we have long hoped, planned and envisioned. But, even with these many broken systems, we are doing our best to continue hobbling along. Our country has many resources which are unheard of in so many other nations, and while it's most certainly an uphill battle to obtain a larger number of these resources for survival during hard times, it is possible, and many of these resources are part of our rights as a citizen of this country. 

We are said to have one of the best judicial systems on the face of the earth, some of the best, most advanced healthcare which is sought out by many persons outside of the United States, and of course, the opportunity to "live the dream." While such subjects can very easily garner conversation and agruement for days upon end, there is one I'd like to focus on today: SOCIAL SECURITY DISABILITY. Just as when an individual goes to battle to obtain their rightful compensation for something like a car accident, getting an award for disability benefits can be equally, if not more challenging. As a general rule we each pay out certain funds throughout our lifetime to ensure our safety, future, and health.  A basic example: We carry car insurance in order to protect our own interests. With each monthly payment, we have the expectation, that should we find ourselves in an accident (specifically no fault), that we will then be appropriately and fairly compensated. To me, this means that we should not have to fight tooth and nail to receive the amount of assistance required medically and property wise, to rectify the matter. Unfortunately, this is not always the case. It seems, increasingly so, that "we," as a society in general, have to fight (and fight long and hard) to obtain the resources which we are already entitled to. This matter could not be more true when it comes to the question of gaining Social Security Disability. Most of us have heard the horror stories about applying, and trying to gain approval for, Social Security Disability, at one time or another. But, as a general rule, until it becomes your own reality, or that of someone close to you, you are not aware of the massive feeling of injustice and frustration which accompanies it. 

I am so often saddened, disgusted, and completely confused, by the way our government so frequently treats those whom are disabled and/or ill. All too often those who find themselves in need of disability benefits are denied said benefits in the name of "saving money." As citizens of the USA, everyone who works and pays into the social security system relies on the concept that should they one day become ill or disabled, they will, at the very least, have some financial support to fall back on if they find themselves in a position of desperation due to health conditions which are not the result of their own desire, fault or hope. Now, let's not get confused, anyone and everyone should know that benefits alloted from our Social Security Department are not large in quantity by any stretch of the imagination, in fact, the majority of those who collect SSDI don't even receive enough money on an annual basis to push them above the poverty line. But, as we all know, some money is far better than no money. And, just as with unemployment benefits, we the people, pay into this system. Those who collect benefits are receiving money they made during their work history. It's not a free ride, and the total monthly benefits alloted to any given person is determined and based upon the person's former income, ultimately the amount they put into the system. And, that monthly amount is only a fraction of what was once a person's monthly income, not the equivelant. So, for anyone to say that these benefits are a "free ride," money the government and other tax payers are providing, are mistaken. 

Most of those whom apply for disability are doing so out of great need. They are not doing it for fun, because they are lazy, or want to seek some easy way out of working. Individuals applying for disability are usually in a place of financial strain and desperation, and are more importantly, struggling with a serious illness, disability or other medical condition, which severely hampers their life and ability to function and survive. A large percentage of those whom apply for these benefits the first time around are denied. The second attempt may be more fruitful for some, but still, many receive a repeat letter of rejection. And, we can't forget that the process, in and of itself, takes many months, if not years, before that letter of denial is sent to the ill/disabled citizen waiting anxiously for it's arrival. Along the way, most of those in this long, drawn out process are barely scrapping by to make ends meet, all while facing mounting medical bills and a chronic state of illness. In our nation, within our society and it's many communities, we have a general pattern of waiting until things become very desperate before finally helping a person climb out of a deep hole. We build our cities this way and run our healthcare system in the same fashion. Instead of placing a higher value on people, we want to take all the short cuts, throw quality out the window, wait until things are horrible and falling apart, and then we "fix" them. And, ultimately, in these given situations, we have to put much more money into a problem than we would have incurred if we had only taken preventative measures in the first place and spent a little extra doe in doing it right. Is it greed? Is it the lack of patience? Probably. Do we ever learn from this pattern, a broken way of doing things which only seems to leave us in a more desperate place? Seems like the answer is all too often, no. So, while one person cannot change the world, this country, or the various systems we contend with, when the focus is smaller, working only on what we can each do as individuals in our own lives, we learn how to advocate for ourselves and make the system work for us.  Learning how to advocate for ones self creates a shift in power and makes life a little easier, and a bit more fair, if you will. I am not claiming that this action and way of being is easy by any stretch of the imagination, but, it does assist in reducing the overall anxiety, feelings of failure, and stagnancy. It also serves to make a person who feels less than powerful, reclaim more control over their lives and their circumstances.

I am certainly not an expert in matters with Social Security and Disability benefits. I don't know all of the laws, loopholes, or answers for why it is so darn hard to get approved for these benefits, but I do know what I've learned along my journey and I would like nothing more than for my experience and understanding to help others who sit in similar struggles.  I applied for Social Security Disability benefits in January 2009. I was ready to receive a negative response, a letter of denial, the first time around, and knew that I would likely need to hire an attorney. Just the thought of it made my blood boil. Tell me of one person who is chronically ill, or deals with a serious health condition, who has the energy and resources to fight the system! If you are applying for disability, it is pretty much a given that you are already exhausted, fragile physically, financially, and likely emotionally as well. And that feeling of being "beat down" seems to be pretty universal when it comes to such matters, and well, just as insurance adjusters know this of most of their clients, so do the officials deciding cases for such benefits. I thought to myself right off the bat, "do I have that fight in me? Could I go to war again with something else involving something so important in relation to my health, my future and my life?" I wasn't sure, but I did know that no matter what, I needed to take one step, one day, one problem at a time. Otherwise, I was surely going to crumble from the pressure, feeling of defeat, and sense of both hopelessness and powerlessness. It's hard to go to battle with anyone, especially a big system or corporation. But, if you don't learn to advocate for yourself, no one else will. You may not always get the answers you want, but, laying down and giving up certainly doesn't make the process any easier either. 

BELOW I have included some of my findings regarding HELPFUL HINTS in GETTING APPROVED for DISABILITY. They are not a guarantee for being awarded benefits, but most certainly can help, and perhaps make your process a little less stressful and mysterious. When all's said and done, it feels best knowing that you have tried and done everything to the best of your knowledge and ability ... leaving no stone unturned. 

As an individual with a very lengthy medical history (one which is very complicated as well), I have found tremendous importance in making sure that I have all my records at my own disposal, even though my doctors, and the medical system itself, has them on file. It's your right as a patient to have all of your medical records, and as a general rule, whether you are ill, disabled, or seemingly healthy, you do yourself a great service to collect all past, present, and future medical records and keep them in your possession. Even while it's the responsibility of a medical system/practitioner to keep your records on file, you never know what could happen to said records, and you are much better off safe than sorry. Medical records have been known to "disappear," both via accident, and some through intentional, but illegal, disposal. 
To request and obtain your records you are required to fill out a medical records release form. You may contact your medical office's Medical Records Department by phone and fax, but you are better off actually visiting this department in person. If you have more than one medical provider, including specialists and other healthcare practitioners, you may need to fill out multiple release forms, especially if you have been seen at different hospitals and within more than one medical system. Make sure that you collect every piece of your medical record; including any scans, x-rays and test results. There is a section on the form where you check which records you are requesting, make sure to check all of the boxes, and if something is not listed/specified, make sure you check the "other" box and explain the record(s) you are seeking. Yes, you may be required to pay a small fee for some of your records (more specifically your actual physical scans like MRI's, CT's and x-rays), but, trust me, if you find yourself in a less than lovely situation in the future where you need those records and they have magically disappeared, it could mean the difference between a proper diagnosis, denial of benefits, or even a smaller settlement for a medical malpractice lawsuit. 
Do yourself a big favor and create your own medical history file in your home or place of business. This is YOUR RIGHT as a patient. Your medical provider and/or insurance company cannot deny you access and copies to your medical records, and you do not have to disclose your purpose for requesting them, period. If you feel hesitant for any reason, simply mark your reason for request as "continuing medical care." This reason is never a lie, because as long as you are alive, you will always be receiving some form of ongoing medical care. Once you have copies of your medical records, review them and make sure that they contain your entire history. Never give these records away. If someone needs to view/copy any records, make sure you tell them that these records are your own personal copies and must be returned/not kept for use in any new files. Be careful with this matter, as with some medical offices, once you allow transfer of possession, even if you tell your doctor that these are your own personal copies, they can then be kept in their files and they will not release them back to you. I learned this the hard way. So, please ensure that any records you carry with you, are copied and returned to your file/possession that same day. No files left over night! 

When it comes to applying for disability and submitting your case, you want to provide as many medical records as possible. Once you've applied for disability your case worker will request your medical records from various medical practitioners and departments. Do your best to follow up and ensure that they have access and information needed to obtain all of your medical records, as you don't want or need any records, doctors, diagnoses, treatments, and so forth, to be overlooked or not considered. Obviously, the larger degree of records you have, the more serious your condition(s) appears, which therefore, shows an overall greater need. Following along these lines, also remember to include all of your medical diagnoses when you first create your application. Including even those medical conditions/diagnoses you may feel are minor, non-important, or unrelated to your main concern and disability. Again, the more you have, the greater your need appears to those deciding your case. Yes, some of these conditions may very well not affect your life, disability, illness or overall functioning, but, you still have the diagnosis, and so, if you have them, use them to your advantage! 

When it comes to applying for SSDI, speak with all of your medical providers beforehand, or at the start of the application process. Visit with, or contact any and all of the doctors, medical professionals and specialists who may be involved with your past, present and future care. Even if the medical professional only played a small part in your diagnosis and treatment, they may have additional and helpful information for your case. Just as with your number of medical records, the longer your list of healthcare providers (and more diverse), the greater the need and severity of any given illness/disability is presented. Request letters of explanation and referral from as many of these healthcare professionals as possible. Any letters on your behalf (more specifically letters which carry more compassion and factual information which detail how these conditions have negativity affected you and your life), even if they are short and simple, go a long way in developing a better case for obtaining approval. Letters from medical professionals are essential (do try to think out of the box too, as primary care doctors are important, but specialists and other healthcare professionals like therapists paint a more diverse picture of your struggle and general need), as they have the medical expertise required to punctuate your medical diagnosis outlined in records, and such explanations better put a face and life to the various black and white documentation. Also, letters on your behalf from individuals in your life outside of the medical arena are also helpful. Seek out as many people in your day to day life, both those within your family and extended friends, in addition to your co-workers, and request letters directed to the SSDI department as well. You can create a general outline of a letter and have each person either add to it, or simply sign it, or rather, they can start from scratch with their own. While such letters will speak to your illness and/or disability, they need not be as medically focused/centered as those provided from your doctors and other healthcare providers. Rather, these more personal letters are better suited in sharing actual observations and feelings. Have these selected friends and family write something on your behalf which explains what they've observed in relation to how you have affected by your health problems; what has changed in your life and how you may benefit from assistance with disability income. When I applied for SSDI I had a number of people write letters on my behalf and I strongly believe that it positively affected the decision of my case.  

I realize that the process of applying for disability is a long, stressful, frustrating, and all too often, a daunting task. I know that the points I have mentioned above may not be a guarantee for an easy case, but I do hope that by using these tips a few people may find their own application process a little less difficult, and perhaps even a bit shorter from start to finish. Just as with advocating for your own health and learning how to navigate the medical system, when it comes to seeking disability benefits, one of the best things a person can do for themselves is to research and acquire as much knowledge on the subject as possible. It most definitely can be a lot of work, and I understand all too well how much of a struggle this can be. When you are dealing with a chronic illness you have a limited amount of energy and it's a challenge to determine where to best use that energy at times. But, for myself, I have found that matters to do with disability benefits and medical related issues are areas which are to my benefit to spend my limited energy. I hope that if you are wading through the process of a disability application, that you do not give up, continue to fight, and always advocate for yourself. You deserve help and respect. These benefits are your right as a US citizen who has worked hard for x amount of years, and it's simply not acceptable for anyone to say otherwise. You are not alone, even though it may very well feel this way. 

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About Me

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My interest for all things related to health & illness arises from my own struggles with chronic health conditions. I have found it most therapeutic & empowering to write about my many experiences within this realm. Through education, my own research, and my ongoing personal challenges, I am teaching myself how to become my own best advocate. To learn more about me, please see the page entitled "About Cat" located at the top of the page. If you have any questions or comments, you are welcome to contact me through the "about" section listed above, or email me at healthandillness@gmail.com. Please note that this address is also linked through my profiles. Blessings of health, energy and peace.

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