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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Thursday, October 27, 2011

Another day, Another doctor ...

A few years back a nurse from my primary care's office said something that struck a cord with me, .. something that a patient may have very easily taken as an insult, but for myself it actually brought clarity and perspective to my life, more specifically the life I have been living these past 5 years or so, .. although, one could argue the concept fits me and my life going as far back as my preteens. What did she say to me you ask? She said that I was a "career patient," a term which I had never heard or considered before, but something which rang so true. It also followed along the same lines as another comment made by my mother a number of times over these last few very challenging and painful years. Let me back track and say that this time spent seeking help, answers, a diagnosis, and finally, treatment, has been very hard on me, both physically and emotionally. One could also easily say that it's been a battle financially and spiritually too, as it seems one only affects the other, just as our body's systems and conditions affect each other, like the game of dominos. 

For the majority of these years I have felt many emotions, spent many frustrating days enveloped in a nagging desperation that the so-called best years of my life, the time in our twenties which is supposed to be racked with happiness, new experiences, success, ultimately the building blocks (or years) of our lives, has been all but wasted being ill .. waiting to get answers, waiting to feel better, waiting for treatment and improvement, all so I can get back to living my life as normally as possible. Many weights were lifted from my shoulders, my heart, and my very being, the day I received my first auto immune diagnoses. Aside from the obvious, one additional weight lifted was the idea and belief that so many of my good years had been taken away from me, wasted, robbed, down the drain with no chance of recovery, and certainly no opportunity to press the rewind button. My mom's statement to me has been repeated over these last few years, but I was not able to accept it and truly appreciate it, .. really be okay with what has been occurring (and what hasn't) as a result of my chronic illnesses, until I allowed myself to see the whole picture, diagnoses in hand. My mom said that this experience, just like with life, has been a true education, one on a doctorate level, and that I had all but earned myself a Ph.D as a result of my ongoing struggles. This idea gave me relief, a sense of peace that I haven't felt in some time, a calm which allowed me to let go of the idea that this time spent being sick, unable to do so many of the things I longed and hoped for, dreamt of, and expected for my life, wasn't for nothing, and that it was a very large, expensive and multi-faceted education which will serve me well in the present and the future. I even hope that as things come full circle, that it may help in the healing of my past, which remains a painful and tender subject with too many layers to count. So, here I am; a career patient. A career patient with an extraordinary graduate degree in life with so much more to learn, but so many more lessons to share. And, one thing I know which brings me much comfort, I am not alone, even while I am unique, rarely fit in "the box," and always seem to fall upon the more unusual, more rare circumstances, conditions, diagnoses, and so on, within every department imaginable it seems. 

I am not sure why all of this trauma has happened to me, to my body, to my life .. and yes, while I don't want to throw a pity party and allow it to be my entire life and all of me, I do find it unfair, sad, and lonely. I have always tried to be an honest person, a real person, one with some integrity and compassion, sometimes too much so, and to a fault, and so, I prefer not to sugar coat things, to avoid apologizing for my life and my feelings. I am only human and I am not sure how else I can reach others if I am not just me. I am overly sensitive to things, overly sensitive to others, their feelings and heartbreak, and to how they react to me, so I can't say I don't care what others think and say, as that would be a lie, but, I am working on it ... working on letting go of other's judgments, opinions, beliefs and even criticisms about me and what I've experienced and endured in the life. Holding on to such things doesn't serve me in any positive manner and only generates negativity. This, I know, is yet another lesson for my doctorate degrees in life, and has been tested over and over by my journey with these chronic health conditions. As I have shared before, I believe we are our own best advocates, sometimes the only advocate for ourselves, and so trusting yourself, knowing your body and following your intuition, your gut, is so important, sick or not. 

Wednesday, October 26, 2011

Finally! Answers to My Chronic Illness ...

It took over 4 years to get an answer, a diagnosis, or rather, diagnoses, for my auto immune conditions. After seeing one doctor after another, finally, on April 11, 2011, I found the doctor who would bring many of my puzzle pieces together, forever change my life, provide much needed answers, and finally, validation of my health battles and a direction for hope. I am told I have two sero-negative auto immune diseases: Psoriatic Arthritis and Ankylosing Spondylitis. Both help to explain a number of my symptoms and many years of suffering, although there remains a few question marks; symptoms which do not fit into the category for either disease. So, with that, my Rheumatologist has hinted and suggested that there's likely a third, although those answers are on hold for now. Getting these diagnoses was like a victory for myself, for my life, my body, and even for my past. 

As a little girl I played many sports. Everything from volleyball, softball, tennis, gymnastics, dance, ice skating, and my most beloved, soccer. I was very active and loved being competitive. I felt great pride and accomplishment through both my own self and by way of other's reactions to my achievements in this arena. I also desperately wanted to please everyone, adults in particular. I was raised within a society which told young people not to question authority, not to doubt the opinions, beliefs and statements of your parents, teachers, and of course, the doctors. Some kids seek attention by doing negative things, I wanted the opposite; attention and praise for the positive things, and I sought it out as often as possible. So, of course as a young child and teenager the last thing I wanted was to disappoint someone, especially the adults. I wanted to make them proud and happy, not ashamed and angry. Being an overly sensitive person only increased my reactions to things, and I clung to every word, hand gesture, even facial expression, worrying constantly that I have done something wrong to make another mad, disappointed or upset in some way. 

When the pain started in my low back I was only 9 years old. I had yet to go through puberty and didn't have a full understanding and ability to recognize my body, but one thing I did know for certain: I was in pain and a lot of it. At first it came intermittedly, brought on or aggravated by more aggressive activities and sports, but I didn't pay it much attention and left it at that. As the pain and overall discomfort grew worse I was unsure if this was simply how everyone else felt in their body, and while I did say I was in pain, I only did so rarely and quietly, as not to upset or worry anyone. As time passed the pain became to much to bare when it came to playing sports, the last to go was volleyball. I remember the last day I played the game in fact .. I was good at it and the team looked to me to be a good player, and that day's pain was beyond horrific. I had to leave half way through and didn't live up to my typical abilities. My parents, especially my father, didn't understand why I needed to stop, and frankly, I wasn't sure why either, I just knew I was in great distress. Just like the rest, I gave up the game of Volleyball, with many thinking I was being lazy, or at least that's what I perceieved, especially since my doctor's had repeatedly said I was fine after each visit I came and complained of pain. Turns out those doctor's knew exactly why I was in pain, but didn't do anything about it ... although one later wrote in her notes that she was surprised I was still able to walk due to my extreme condition of Spondylolisthesis ... yet not one word of confirmation of my pain and complaint. I still wonder if that doctor simply hated me, as why would anyone with half of a heart allow a child to continue forward without any help knowing the severe and probable consquences of my condition? I can't answer that question. I don't think I will ever know, but it's always remained in the back of my mind, and in the pit of my stomach. She later went back and revised my records to make herself not appear at fault ... simply to save her own ass. The other doctor's made my x-rays, three years worth, vanish into thin air .. leaving no record, no footprint of me and the progression of my life altering condition. Both doctors got away unscalthed, able to continue practicing medicine. Sickening. 

As a child I didn't have a voice. I had my intution, which told me something was very wrong, but I didn't have the right words, the strength, the power to continue speaking up and fighting for my body. You do not question doctors ... at least that's the general belief and unspoken rule. And as a child, you are dually gagged, as they are both an authority figure and experts, how dare one question them when you're simply a child? You don't. Instead of continuing to voice my struggles, pain and tremendous growing discomfort, I wanted to please everybody, not create any problems, ... so I stopped; ultimately, I shut up. As a result I literally witnessed the edge of a cliff, coming close to falling off. And, while I didn't fall off, .. while I'm alive and still walking, my life was forever changed in so many permanent and not so wonderful ways. As an adult I was not going to allow this same scenerio happen again. I was not going to give up or shut up, and I vowed to continue listening to my body and stating the problems, even while people were annoyed and questioned my sanity. Yes, a lonely and long road to travel indeed, but I did it, and as a result, I won a big victory for that little girl inside of me who had no voice. Perhaps my past experience was a set up and a needed lesson in order to navigate this more recent struggle ... I am not sure. Although, I must say, that had it not been for that little girl, the pain, the suffering, the battle I nearly lost, I am not so sure I would have been so persistent this time around. 

What Does It Feel Like to Have an Auto Immune Disease?

Having an auto immune disease feels like a gradual yet steady descent into a deep dark damp hole. It's similar to that of depression, but not the same paradigm. As you begin to fall there are a few people that notice and try to reach out and grab you, but you are not able to hold on for very long, soon finger tips lose touch and the hole tightens its grasp. From this hole you have a hazy window to see life; where you get glimpses of all the things you once held so important. You watch it all pass you by, and with time gaining speed, you make attempts to climb out, but you simply exhaust your body even more. Sorrow, anger, and plain frustration, are common place ... and, after a time, you don't want to "explain" how you feel anymore. You don't have the energy, the desire, the will to get others to understand. Heck, you are in a daily struggle for your life, you cannot waste your precious fleeting energy on words; words that so frequently go unheard anyway.

There are a few days - absolutely wonderful and overwhelming days - where you actually feel like a human again. Unsure of when to expect such a day, especially as the years roll by and your "bad days" outweigh your "good," you often awake with a better sense of your old self, like meeting someone that has been packed away and brought out for a special occasion. You seem to have little or no control over this person, or that of the obviously less desirable "sick person." All you know is that when this person, and this seemingly healthy body appears, you must take advantage of all it has to offer. I must say that this is a big pitfall in the world of a person living with an auto immune disease. Especially true for someone whom is dealing with a very active period (better known, and often referred to as a "flare"), with no sign of a remission in sight. I say this because someone living with a chronic illness - an illness which involves itself in nearly every facet of one's life - is truly walking a tight rope. 

A "balancing act" is putting it mildly when looking at how to have a "normal," and semi active life, while struggling with such an illness. I cannot speak for other people living with the same or similar conditions, I can only speak for myself, but, I do believe that many would agree with me when I explain that "overdoing it" on a "good day" is a common occurrence. As a former perfectionist (former only because I could/can no longer physically deal with the pure energy perfectionism requires), a good day presents itself with so many "things" to do. So many things have been left undone, waiting for your attention, literally in every part/area of your life (from financial issues to personal relationships, and everything in-between), and when you have an opportunity to tackle the wide array of items that have been torturing you from afar, you try to get as much accomplished as possible before you drop from exhaustion. Unfortunately, because you are trying to put a few weeks of activity into a day or two, it is very easy to overdo it, which clearly creates imbalance, and is usually just too much for a less than stellar body.

Plain and simple, when your body has been hijacked by some ridiculous condition, you cannot, by any stretch of the imagination, function at the 'average person's' level. You simply cannot get even the most basic things done in an entire day that would easily be accomplished by a healthy energetic person in an hour or less. You are lucky (and happy), to be able to get out of bed, take care of your own hygiene, feed yourself (if you can stomach food or even have an appetite) and make a good attempt at contacting the "outside world." 

To some, perhaps many, individuals like this appear lazy, and are very frequently labeled as such. While putting myself in these outsiders' shoes, I can completely relate to how one might view such a person, as no one truly "gets it" until it touches their own lives in an intimate manner. And, even when something of this nature is in your life everyday (say you are living with a loved one whom is experiencing the grasp of a chronic illness), you still don't really get to a level of complete understanding and true empathy.

I get it, it's hard to understand. It's difficult to grasp, and then deal with it on an everyday basis. Having compassion on a constant basis is a strain on the other party as well. Trust me, if you are that other person in the equation, we know that you want to scream, pull your hair out, and tell us to just get better, dammit! And trust me, there is nothing more in this world that anyone with a chronic condition wants than to just BE NORMAL AND HEALTHY. It's not fun, it's not comfortable, it's not what "life" should be, nor is it what we want.

After you are asked repeatedly how you are doing, how you are feeling, ... as well as things more sarcastic, like, so ... when are you going to feel better? - even while many questions are simply out of love, respect and concern - it becomes harder and harder to answer, or even speak to at all, as the answer feels like it will never change. And I do believe that many people become fearful that perhaps it won't. At least this has become a very real fear for myself. I think too, that because such an all encompassing health related condition can feel as if it has saturated your life (and often it does), it absorbs a lot of one's being and fills the many corners of the person's existence, even when it is actively resisted. This leaves the disease in control, and it very quickly and easily begins to feel like you are the disease ... that it is the only thing that defines you. This is a tough place to be, and again, you find yourself trying to partake in a balancing act.

As for this very moment, I need to take a deep breath and take a break. I am trying to teach myself better ways to cope. Not to overdo everything when I get that special day when the old me is a resident in this very alien body. I'll let you know the results. Thank goodness that the perfectionist is simply unable to function, as she would have lost it a long time ago!

Friday, October 21, 2011

Invisible Illness Week: 30 Things About Me

1. The illness I live with is: 

Psoriatic Arthritis, Ankylosing Spondylitis, Fibromyalgia, Hashimoto's, PCOS, Spondylolisthesis in my low back and neck, Degeneration and OsteoArthritis above my spine fusion & neuropathy/permanent nerve damage in feet. 

2. I was diagnosed with it in the year: 

I was diagnosed with my spine condition, Spondylolisthesis, in 1996. I was just diagnosed with the auto immune diseases, PsA & AS on April 11th 2011. I was previously diagnosed with the others in 2002 & 2007.  

3. But I had symptoms since:

I began experiencing severe pain and nerve related issues involving my back going as far back as 1991. I started to see symptoms of the auto immune diseases appear in 2006/2007. Same for the PCOS. 

4. The biggest adjustment I’ve had to make is:

With both of the major health conditions (Spondylolisthesis & PsA/AS, and all things that came with them) the biggest adjustments I had to make was learning how to live a bit slower, not feel guilty about how I felt and being unable to do everything I wanted and others expected of me (teaching myself boundaries & how to say no), and finding balance within life with these conditions & the "new" body in which I now reside. 

5. Most people assume: 

Most people assume that I am healthy and simply lazy. 

6. The hardest part about mornings are: 

 Getting out of bed & "getting going" takes me a long time. 

7. My favorite medical TV show is: 

Mystery Diagnosis. It helped me learn how to advocate for myself and continue seeking the answers to my symptoms. It also gave me inspiration, encouragement, and a feeling of no longer being alone in my battle with my body & the medical system. 

8. A gadget I couldn’t live without is: 

My MacBook. I'm typing on it now! :) It's given me an outlet for my experiences and pain, connected me with people I likely would never had met, along with giving me back a feeling of productivity, success, and purpose. 

9. The hardest part about nights are: 

Knowing I have to start it all over again the next morning after it took so long the day before to get it together. Aside from that, I love the night. It's when I feel the best and am most productive. 

10. Each day I take _ pills & vitamins:

8 different pills & at least 5 different vitamins ... I should be taking more! 

11. Regarding alternative treatments I: 

I find a lot of help within the arena of alternative medicine and I could not function without it! My favorites are Soma Body Work & Reiki Energy Work. 

12. If I had to choose between an invisible illness or visible I would choose: 

I chose neither. I would LOVE to be healthy, feel good everyday and have the energy I used to! 

13. Regarding working and career: 

I have a lot of anger, frustration, sadness, anxiety and fear around this subject. I wanted to do so much - and still do - but I am not at all where I wanted to be, nor anticipated I would be, as a direct result of my health issues. 

I wish I had my graduate degree, but I am happy I at least accomplished my Bachelors at this point. I still hope to go back to school so that I may get my PsyD or JD ... or preferably, both! 

I have many loves, a lot of experience in several fields (mainly personal life experience - including western & eastern medicine), and I believe a number of talents. My education has been in the direction of psychology and counseling, although I did dabble a tiny bit in law/political science as well, which included an internship as a Criminal Investigator. I have a counselor's license and worked briefly at a Chemical Dependency Center with children and teens, but became ill not too far after graduating from college and beginning this work. 

In addition, I have a natural inclination towards the arts, design and writing ... really anything creative.  In 2009 I got online and started blogging. I had began to consider the idea of writing a book about my life only a few years earlier, and blogging really helped to shape a new direction and purpose for my life as it is now. I have been able to utilize my formal education, my ongoing research around everything health and illness, my personal experiences with chronic illness, my natural abilities and inclinations as a counselor and overall sensitive/intuitive spirit, and my need and general talent for beauty & art. 

While I do not professionally work today, I am making strides towards something much larger in regards to sharing my crazy painful journey with the masses ... or anyone willing to listen! :) 

14. People would be surprised to know: 

I played many sports as a child and loved them! I wish I could still play but my body doesn't allow for it ... especially my "flipper foot." 

15. The hardest thing to accept about my new reality has been: 

There have been a number of things, but two are at the top of my list. The first is knowing that I may never get to have a biological baby of my own. This one is extremely painful, and again, I am working on dealing with it today. The second is accepting that my career and my life as a young person was not, and is not, at all what I wanted, hoped for, and expected. 

16. Something I never thought I could do with my illness that I did was: 

Find some greater purpose for all the pain & struggle I've endured and turning my chronic health problems into something amazing ... Not quite there, but I've made huge strides and will continue to do so to the best of my ability. 

17. The commercials about my illness: 

I think there's one with a golf player for Psoriatic Arthritis? And of course there are a number of Fibromyalgia related ones. Aside from that, I can't think of any. And I would sh*t in my pants if I saw one about my spine condition!

18. Something I really miss doing since I was diagnosed is: 

Being able to work, go to school, take care of myself, and clean my home/run errands, etc., all in the same day. 

19. It was really hard to have to give up: 

My perfectionism. I need cleanliness and organization in most areas of my life, but as a result of my illnesses and their subsequent symptoms, I do not have the energy and capability to do many of the things like I used to. It was really hard to let go and no longer allow it to bother me. 

20. A new hobby I have taken up since my diagnosis is: 

Blogging, Facebook & website/blog design ... all of which were directly influenced by my illness. 

21. If I could have one day of feeling normal again I would: 

Do an amazing workout; clean my house, car, even my purse, from top to bottom; go shopping; snowboard & go on a long motorcycle ride with my significant other; run as fast as I can; do cartwheels; play a soccer game; spend quality time doing activities with my family out in the big bad world; then go dancing at a club/bar with friends until the wee hours of the morning. 

22. My illness has taught me: 

My illness has taught me that life is not fair but there can be a wonderful set of life lessons and some beautiful purpose if you're willing and open to it. 

23. Want to know a secret? One thing people say that gets under my skin is: 

I have two .. sorry. "So, when do you think you're going to finally feel better?" ... When people ask "How do you feel?" .. then, when you answer, they follow it up by asking "Well, why do you feel that way?" ... as if they have not been listening for the past 5 years or more! - doctors included. It's mind blowing. 

24. But I love it when people: 

Read my writing and give me encouragement, inspiration, motivation and praise ... makes me feel like I'm worth something and that I'm not a complete failure. 

25. My favorite motto, scripture, quote that gets me through tough times is:

"Foot Prints in the Sand" - I read this poem every single day for four plus month after my surgeries while recovering in my body cast and flat on my back. It still gives me hope and makes me cry to this day. 

'One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.

This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.

So I said to the Lord,
"You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during
the most trying periods of my life
there have only be one
set of footprints in the sand.
Why, when I needed you most,
you have not been there for me?"

The Lord replied,
"The times when you have
seen only one set of footprints,
is when I carried you."'

by Mary Stevenson

26. When someone is diagnosed I’d like to tell them: 

To continue advocating for themselves and never doubt their intuitions. Try to find balance and not overdo things. Focus on taking care of yourself and do your very best to let go of any guilt around doing so. Learn to say no and be okay with it. Seek out others who can truly relate and have compassion & empathy, as it's so important that you feel someone understands and respects you and your new circumstance. Find something you love doing that does not deplete too much of your energy, but can distract you. Try to find humor in things ... life becomes too serious and overwhelming, and it's easy to drowned when you're chronically ill. Support & compassion are key in my opinion. 

27. Something that has surprised me about living with an illness is: 

How little doctor's actually know. 

28. The nicest thing someone did for me when I wasn’t feeling well was: 

I can think of several examples, but some of the more simple things which have been done for me when I'm feeling really icky include: my mom sending me "kitty cards" in the mail to make me smile; my fiancee warming up the down comforter in the dryer then wrapping me up & arranging the pillows so I'm cocooned; my mom running to the grocery store, pharmacy and health store for my "supplies"; my fiancee giving me feet, neck & back rubs when everything aches so terribly; my sister sending me loving text messages to tell me she loves me, is thinking of me and hoping I feel better; my dad making sure that I have money to pay for my Soma Body Work massages ... I can think of many more, but I will stop there. I am truly blessed with awesome people in my family/life & I couldn't survive without them, their support, help and ongoing understanding & love! 

29. I’m involved with Invisible Illness Week because: 

Because chronic illness - especially invisible chronic illness - is hard to understand unless you experience it yourself, it's so important for those who do battle some kind of chronic health problem to connect with one another and provide their mutual support. I just wish I knew it was "Invisible Illness Week" a week ago! LOL ... Better late than never I suppose! And hey, I'm used to being late these days anyways! I wouldn't be me if I weren't late! People would be shocked and confused, and I can't let them down! LOL. 

30. The fact that you read this list makes me feel: 

A little less invisible. Thank you!!! 

Tuesday, October 18, 2011

The Battle To Regain LIFE

The last 4 plus years of my life have been saturated by a nasty struggle with my health, and the subsequent illnesses, which at times, consume my body, mind and life. I have "good" days, and I have "bad" days, although unfortunately the majority reside in the latter category. As a result of my ongoing challenges with chronic illness, my life has not been anything close to what I hoped for, anticipated, dreamed of, envisioned, nor planned. I know (and believe - at least most days) that my experiences have a greater purpose and are continuing to shape me and my future successes, and hopefully, my ability to help others, and even heal myself. Still, this attempt at a positive outlook does not make me immune from a deep sadness and anger associated with missing so much of my life as a young person in their twenties, and soon, early thirties. In fact, the best way I can describe feelings related to this piece of my journey thus far, is simply that I've felt frozen, and that life has been passing me by at tremendous speeds while I watch passively through a double paned window. I believe that a part of this "frozen" feeling is directly related to the fact I did not have any answers for my worsening health state for many years.

I've seen countless doctors since the age of 25 - which is another story in and of itself - but was only finally diagnosed with two auto immune diseases on April 11th of this year. It took another 4/5 months to obtain coverage for one of the medications I will need to help stop the disease progression in my body. I have yet to begin the injections, but hope to do so next week in fact. I am both excited and terrified. Excited for the obvious reasons: That I may actually begin to feel better again, .. to feel human and reclaim my life! I also feel scared and anxious. Why? Because even while I am trying to be as positive as possible, I still have a fear in the back of my mind, .. the question which looms large: What if it DOESN'T work? And then what? I am TRYING not to go there unless I need to cross that bridge, but I wouldn't be telling the truth if I said I didn't feel this way.

When my many symptoms began to present themselves back in late 2006, I was in a pretty good place in most realms of my life. I was proud of my accomplishments, felt successful in many departments, was excited about what my future held, and truly had a passion for everything in my life. At that point in time I had graduated with a BA in psychology, obtained my counselor's license, began working as an Intervention Prevention Specialist Counselor with children (yes, a long title, I know, .. but not nearly as glamorous and complicated as it sounds!), and was applying for graduate programs to get my JD. I was also financially stable, and while not wealthy by a long stretch, did have nice things and certainly didn't want or need for anything. I was also beginning to plan my future family, as aside from the matters involving my back condition and a pregnancy which would have been constricted to bed rest, having babies was not out of the question and very much expected and desired (the latter still is, but now the dream has all but faded away as a possibility, let alone an expectation). In addition to these and other positive aspects of my life, I had support and strength in several wonderfully loving and loyal (or so I thought) friends and family. It's funny how those you believe will never abandoned you - no matter the circumstance - so easily evaporate into thin air when your life no longer resembles the perfect picture you once held so dear.

When a person loses their health and goes to war with their own body, it's no stretch of the truth to state that everything else is directly affected as well. It's like a game of dominos. Sooner rather than later each piece is knocked down; financially, emotionally, spiritually, etc. For the last few years my life has literally consisted of just surviving. Rebuilding my life, my hopes, dreams and future, are all sitting on the back burner right now, as I cannot truly live, only focus on surviving, until I witness healing for my body. I am fairly confident that these continuing struggles and experiences are a foundation for something pretty awesome some day ... and some day soon I hope. As a direct result of my situation, I have spent the past few years doing A LOT of research within the medical field, and in doing so, have truly taught myself how to be an advocate (and now I'm known as "Dr. Brenna" within my family and close group of friends, lol). Using my education and work experience within the fields of psychology, counseling, and even a few healing modalities, I realized that by sharing my experiences and knowledge through writing, these past few years may not be such a sad waste after all. My hope and goal is that it may become something amazing for both myself (and ultimately my own healing on several levels), as well as a way to reach others and touch their lives .. specifically those who face similar struggles. With all that said, I have created a few blogs which focus on these exact subjects, and am presently working on designing my own website and blog which may encompass all of my writing, research, and compiled knowledge.

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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