Thursday, September 29, 2011

Sjogren's and Disability

I have been reading a lot of posts of the Sjogren's Syndrome Foundation Facebook page lately about disability for this disorder. People seem to have a lot of questions and comments not only about the process itself of obtaining disability, but also about the journey which is at best, extremely stressful. Having gone through the arduous process myself, I thought it might be helpful to blog about my experience in the hope that someone may find the information useful or at the very least, know that they are not alone in their struggles and frustration with getting through this system.

My journey with disability began in 2008 when I was put on short term disability through my former employer. After a period of time (I believe it was ninety days), it converted to long term disability which was a benefit I had elected through my employer, thank god. What that meant was that a private disability company, contracted through my employer, paid me sixty percent of my previous year's gross income. Of course I had to get documentation from my doctors and fill out a million forms.

As time went on, it became apparent that I was not going to be able to return to the workplace anytime soon. My long term disability company (Aetna) required that I apply for Social Security Disability (SSDI). The way it was explained to me was that if I was approved for SSDI, Aetna would subtract the amount that SSDI paid me every month from the amount that Aetna paid me so that I would always be earning that sixty percent. I also would be eligible for Medicare if and when I was approved for SSDI.

I first applied for SSDI in October 2009. It required a lot of forms, phone calls, and patience. From what I have read and heard, most people are denied when they apply for SSDI the first time. This is why I was so shocked when in January 2010, I was approved for SSDI. However, the joke was on me. After being on SSDI for about six weeks, I was notified that I was actually DENIED and that my SSDI claim was accidentally approved. The amount of drama and stress this created in my life cannot really even be put into words. It affected my disability through Aetna and caused financial havoc for a year afterwards. I mention this because the only reason I got through it was due to meticulous record keeping on my part.

I appealed the first denial and was denied a second time. The reasons given had to do with the fact that the doctors reviewing my case through Social Security felt that despite my illness and limitations, I should be able to do some type of sedentary work on a full-time basis. I constantly had to justify my symptoms, my illness, and my limitations. A very demoralizing experience I can tell you.

My third appeal involved an administrative hearing with a judge. I was scared out of my mind. Mostly because I didn't think that I would be able to handle it if I was denied again. I was fortunate enough to have representation at the hearing by a company called Allsup. They are an organization which assists people in obtaining SSDI. I was even luckier because it was Aetna who provided the service free of charge. They had their own interests in mind by supplying this representation because if I received SSDI, that would be less that they had to pay me. However you have to take your help where you can get it and I knew it would benefit me in the long run.

I went to the administrative hearing and in May 2011, I was finally awarded SSDI. I think the best part for me was that I was just relieved to have the process over with. Despite the fact that both SSDI and Aetna review my case periodically and I still could have problems with either in the long run, at least this part of the process was over.

There are many things I learned along my journey of applying and receiving SSDI and they are as follows:

1. As mentioned earlier, keep meticulous records. To start with, get copies of all your medical records. As someone who saw twenty plus doctors, I realize what a task this can be but it pays to have them as a reference. Knowledge is power! Also make sure to document every single interaction you have with anyone related to your claim, especially the Social Security adjuster. Keep track of any monies that are given to you or taken from you. Trust me, mistakes can and will be made so impeccable documentation is a must!

2. Get a doctor in your corner. This is especially important with autoimmune disorders as many times they are not accurately diagnosed and/or symptoms can vary so greatly. If you have a rheumatologist, they are your best bet as they are most familiar with Sjogren's Syndrome. Make it clear to them that you are applying for disability and that you would appreciate clear documentation in your record as to why you are disabled. When I was approved for SSDI, the judge sent me a very long and detailed letter about how he came to his decision. He said in the award letter that there were two compelling pieces of evidence in helping him make his decision and one of them was letter that my rheumatologist at the time had written about why he thought I was disabled.

3. Many people are under the misconception that SSDI is given out based solely on your diagnosis. I found as I went through the application process that this is not where their focus is. Honestly, I don't think they care if you have six months to live. What the folks at SSDI are concerned about is how you function on a day to day basis. Make sure to stress this when you are speaking with the folks at SSDI and on your assessment forms.

4. Know why you are disabled. This seems like common sense but you would be surprised. When I was preparing for my hearing, I spent a lot of time thinking about WHY I couldn't work and I discussed this with my doctor. I can have days and even weeks where even though I still have symptoms, I can get myself through a day and be productive.  However this is because I usually control my environment and all the factors that lead to a flare-up including climate, diet, schedule, and stress. This does not happen in the workplace. More importantly, I cannot reliably and consistently get myself to a job on a full-time basis due to flare ups of symptoms. There is no employer that I know of that would be OK with being out of work as frequently as I would be. Stress these facts during your hearing. It could make all the difference.

5. Be honest. This is critically important. When you are sitting at a hearing, any decent judge is going to be able to tell if you are exaggerating your symptoms/situation. If you are truly unable to work, tell the judge why. Make sure to not leave out any details. Everything counts. When I received my award letter from the judge and he mentioned those two compelling pieces of evidence that helped him make a decision in my favor, the second piece of evidence was my testimony at the hearing. He said that he found me to be forthright and honest about my situation.

The SSDI process is not easy. It takes time, patience, and diligence. Not everyone who needs disability is granted it and there are people receiving benefits who don't need it (this is not a judgment, but a fact from my conversations with said people). However like everything else we encounter when faced with such a complicated disease like Sjogren's, we must fight for what we need in order to survive and yes, even thrive.


You can do it.

Photos Courtesy of Google Images

Sunday, September 25, 2011

Love Notes

He admits when he thinks he is wrong.

He forgives me when I am wrong.

He has made me realize that my sarcasm can hurt and that I need to use it a little more judiciously.

He gets up in the middle of the night to put in a relaxing movie and rub my joints when I can't sleep from the pain.

He has taught me that age is just a number and that you are never told old to find your one true love, whether it be when you are 39 or even at 53.

He knows that words can hurt and therefore never resorts to name calling in an argument or at any other time.

He rarely raises his voice, especially since he knows it freaks me out.

He understands the value of honesty.

He is not only a good definition of the word "father" but exemplifies what it means to be a "dad".

He encourages my dreams.

He loves and appreciates my body no matter what size it is but yet supports me in my quest to lose weight and become healthier.

He doesn't like hospitals but he sits there and holds my hand.

He understands the art of compromise.

He knows when not to ask questions and just let me cry.

He understands the importance of my friends in my life.

He treats my family like they matter and not as a burden.

He showers me with affection.

He makes me want to be a gentler and more patient woman as well as just an overall better human being.

He inspires me to not settle for less than I am worth.

He has shown me that if a man truly wants to be with you, he WILL wait.

He reminds me of what is really important in this world.

He is a lesson to me that relationships and true love are hard work sometimes, but that the tough parts make us stronger.

He doesn't run when the going gets tough or when I think he would be better off if he did.

He is living proof that all the "good ones" aren't taken.

He makes me realize that I can love someone who is not perfect and that maybe I need to examine some of my unrealistic expectations.

He makes me think.

He never lets a day go by without making me laugh.

He has proven to me that love truly should not hurt.

He has helped me learn how to live more fully and has taught me that nothing is impossible, especially with love.

1 Corinthians 13

If I speak in the tongues of men or of angels, but do not have love, I am only a resounding gong or a clanging cymbal.  If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but do not have love, I am nothing.  If I give all I possess to the poor and give over my body to hardship that I may boast, but do not have love, I gain nothing.

Love is patient, love is kind. It does not envy, it does not boast, it is not proud.  It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.  Love does not delight in evil but rejoices with the truth.  It always protects, always trusts, always hopes, always perseveres.

Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away. For we know in part and we prophesy in part,  but when completeness comes, what is in part disappears.  When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put the ways of childhood behind me.  For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.

And now these three remain: faith, hope and love. But the greatest of these is love.

Sunday, September 18, 2011

Writing From the Heart

This is the link to a guest post that I wrote for the WOW! Women On Writing Blog (Friday Speak Out series) published on September 16, 2011.

 It is entitled "Writing From the Heart".

Tuesday, September 13, 2011

Second Chances

I used to hate blueberries.

Really hate them.

Now I love them.

Yes, I realize that may not sound all that profound but it is for me. There were only two fruits in the world I didn't like until this past summer, raspberries and blueberries (still not a huge fan of the raspberry). I absolutely love fruit salad and it so happened that my boyfriend's sister-in-law makes a fruit salad to die for. The first time I had it was at her home several months ago. I sat there and looked at this delicious creation thinking about how much effort it would be to pick out the blueberries. Then I got to thinking about why I hated blueberries. I think I tried one when I was younger either as a small child or teen. But I wasn't sure. So I had this great dislike for anything blueberry but really was not sure if it was even related to the taste.

I did eat the blueberries in that salad because I figured the taste of the other fruit would mask it and I was right. Then I started adding them to these green smoothies I make. But I still had not eaten them alone. I have been doing a lot of research about healing through foods, nutrition for autoimmune disorders, and superfoods. Blueberries are like the jackpot of the nutrition world. I had to get more blueberries in my system!

Then it happened. I had some blueberries in the refrigerator for my smoothies and I ate one. By itself. was delightful. I loved blueberries! I couldn't believe I had missed out on this yummy, versatile, easy to maintain superfood! What the heck was I thinking?

I know exactly what I was thinking. Like so many other instances in my life, I shunned the blueberry without really giving it a chance. A chance to prove itself one more time. A chance to explore its possibilities.

How many times do we do that in life? Dismiss our blueberries, so to speak, without a real just cause, only to find out what beauty and benefit they hold for us? We get the notion in our heads that we don't like something or someone without ever really knowing why. Or we think there is a reason, but when we stop to try and identify it, the details become quite cloudy. The person who we met one time months ago and said something that rubbed us the wrong way, well forget them! But you see, maybe that person was having a bad day or not feeling well. Maybe said person ended up regretting what they said. Maybe they just are not very comfortable socially when interacting with people they do not know.

Here's the thing though, maybe you could approach that person from months ago and end up having a great conversation, finding out that you have a lot in common. Person from months ago could become a very good friend. Heck, they could even become the love of your life! You just never know.

Never close your mind to the possibilities of what exists out in the world. Time is transient. People are transient. How one feels or perceives a person, place, or thing now is not necessarily how it will seem in the future. So maybe this is the time to give your "blueberry" another chance. You never know what great things and people you may find if you do.

Sunday, September 11, 2011

Safe Haven

What good fellowship we once enjoyed as we walked together to the house of God. ~ Psalm 55:14


There is a safe haven for me in this world. Besides my home. Today, September 11, 2011, I am even more aware and more appreciative of having a refuge from the world. A world that is oftentimes unjust and unkind. It is a building, simple in structure and design, yet filled with people of all types. It is not an invincible building; it is still susceptible to the evil people in this world and the weapons they may use. But the people in the building, they are filled with love. It is the love that makes it my refuge.

I love walking into my church and today was no exception. We have spent our summer worship services in our small chapel which is a comforting place in itself, but going back into the "big house" each September signifies people returning from summer vacations and the start of a new season for us. People come together again to celebrate a new Sunday school year. It is a  time of new beginnings and new projects. New faces and new opportunities for fellowship.

As much as I love my safe haven, it is not about the walls, ceiling, flowers, or pews. It is about what I feel when I am there. I feel God's presence. I feel a sense of peace that is often difficult for me to put into words. I can be myself in this haven and even when I make mistakes, say the wrong things, or have a bad day, I am accepted. It is the place that has helped me reclaim my identity and my relationship with God. It is the place I have found love of all kinds.

Because of vacation and illness, I have not been at my church on a regular basis over the past few weeks. Usually I am there at least twice a week, oftentimes more depending on what missions and activities are occurring that week. I thought of that when I woke up this morning. On top of the usual autoimmune issues I had been dealing with lately, I had a trip to the emergency room two days ago which resulted in the diagnosis of two ovarian cysts, one of them ruptured. The pain has been hell and sleep has been minimal, especially since pain medications seem to cause me significant insomnia. Despite not wanting to make the effort to shower and get dressed, I just knew that if I got to my safe haven, I would feel better. Maybe not physically, but definitely emotionally and spiritually.

And right I was. When I walked through those big heavy green doors and heard the sound of people laughing and talking, I knew that I was where I was supposed to be. One familiar voice after another. One warm hug after another. Familiarity. A listening ear. Sign-up sheets for upcoming volunteer opportunities. Normalcy. Children just a little taller than the last time I saw them.

Kind words.





These are the things which truly heal... 

Photo: Courtesy of Chuck Myers

Thursday, September 8, 2011

I See Healthy People

"He who has health has hope; and he who has hope has everything." ~ Arabic Proverb

A big realization hit me hard a few days ago.


Here it is...

I am envious of healthy people.

Not an easy thing to admit, even for someone like myself who is self-aware and pretty open about their faults. It's honest though. And now I feel guilty for even feeling that way. Despite seventy-three blog entries over the past year and a half that I have been blogging, I have never written about envy, jealousy or anything related to the topic. There is a reason for that. Envy is a desire for some advantage or quality that another person has. I don't typically think of myself as an envious person. I usually spend more time on making the best of what I have and that doesn't leave much room for wanting something that another person has.

Lately though I look at people I know (always people I know because I would never want to assume that someone is without health problems unless I know for sure) and I wonder. What is it like to just do what you want every day? To have day after day without pain? To not have to plan your week around appointments, medications, and treatments? I hope I don't sound bitter. I know the grass isn't always greener as they say. Everyone has their problems. And let me be clear: I WANT everyone I know to be as healthy as they can possibly be. But that doesn't change the fact that I would like to be in a healthy person's body for a hour...a minute. To have my body be free.

I also often wonder lately if healthy people appreciate what it is their bodies can do. The fact that their body takes them to work every day. The fact that their body can nourish and support a pregnancy. Do people appreciate being able to get up in the morning and know that no matter what they face during the day, their body will physically carry them through it?  I know I never gave it much thought before I got hit with an onslaught of medical issues.

 Do you appreciate it?

Do you take care of what you have and celebrate the uniqueness that is your body? Give it more fresh air and sunshine than fluorescent lights and recirculated air? More nutrients than toxic chemicals? More love than self-hate? It all seems so simple, yet many of us don't do these things for ourselves.

Maybe the best way for my body to be free is to first free my mind and my spirit, completely. Trust more in God. Work on ways to effectively cope. Make peace with the body I have been given. Celebrate when it gets me through a day.

It may just be time to turn the envy I have towards others into gratitude for myself.

Photo: Courtesy of Chuck Myers

Monday, September 5, 2011

The Help

"Wasn't that the point of the book? For women to realize, We are just two people. Not that much separates us. Not nearly as much as I'd thought." ~  Kathryn Stockett (The Help)

"All my life I'd been told what to believe about politics, coloreds, being a girl. But with Constantine's thumb pressed in my hand, I realized I actually had a choice in what I could believe." ~  Kathryn Stockett (The Help)

One must be living under a rock these days if they have not heard about Kathyrn Stockett's blockbuster debut novel entitled The Help. It was recently released as a movie and appears to be a hit at the box office thus far. I am not one to usually devote an entire blog entry to a book or film, but it is one of those stories that just stays with you and hence why I feel compelled to discuss it,;especially since I read the whole 451 pages in a whopping three days. Per usual, I felt that the book was better than the movie.

The story (without giving too much away!) is set in the early 1960's in Jackson, Mississippi. It is told from the perspective of three women. Two of the women (Aibileen and Minny) are black and work as maids and the third (Skeeter) is a white woman from a prominent white family who employs maids. After coming home from graduating college, Skeeter wakes up to the fact that the black maids are treated very differently than white people. This is initially brought to her attention by her fellow white girlfriends who have started an initiative for all homes in Jackson to have separate bathrooms for the "colored" help based on beliefs that they carry different germs and disease than white people, therefore putting the white people at risk. Skeeter also finds out that her own maid, Constantine, has mysteriously and abruptly left the household. Skeeter, an aspiring writer, disagrees with how the maids are being treated and decides to interview the maids in Jackson about their perspective on working for these white families. The daily lives of these maids as well as the Southern homemakers is explored. The result is a story which delves into the issues of overcoming racial barriers of an extremely racist part of the country during a very volatile time in the history of the United States.

There has been an outpouring of criticism over the book/movie since each of their releases. The reasons are numerous but the some of the most common criticisms have been that the story is racist because it depicts a white woman as the savior of sorts to black women. It has also been said in numerous commentaries that the story is not an accurate reflection of the racial horrors that were occurring in the deep South at that time. From some of the reviews that I have read, it would appear that there are some seriously angry people out there; angry that Kathryn Stockett had the nerve to write a book using dialect of just the black women and not also the southern drawl that we oftentimes hear from Southern white women.

As a background, I am a white woman about the same age as Kathryn Stockett and unlike her, I did not grow up in the Deep South. I never had a maid, unless you want to count my mother. I grew up in a very white neighborhood for most of my childhood and in 1970's New England, the fact that I had a friend who happened to also be black, was highly unusual. It wasn't until I went to the University of Massachusetts that I truly understood the racial diversity that exists in this country. I mention all this because I think it makes a big difference in regards to my perspective on the effectiveness of the story.

That being said, here is my perspective on The Help. To begin with, the Help is a work of fiction. Yes, the author grew up in the Deep South, she is a writer, and she grew up with a black maid. I am sure that she drew from some of her childhood experiences when she was writing the book but it is not a memoir. Again, it is a work of fiction.

In regards to the dialect issues, the author is not Toni Morrison or Alice Walker and doesn't claim to be. But that does not mean that she does not have a right to write a book from the perspective of another race. I cannot sit here and say whether she did it well or not because it is not a dialect I am familiar with or educated about. I do feel that it would have been helpful to have had the dialect of the Southern homemakers dialect consistent with that part of the country. It would have added to the effectiveness of her character.

I do not believe that when Kathryn Stockett was writing this work of fiction, that she meant it to be a social commentary on the civil-rights era. I have to say, when I was reading the book and watching the movie, I was profoundly affected by the story. It opened by eyes even more to some of the atrocities that took place in our country's history. The history classes I had in high school and the sheltered world I lived in during 1970's New England time, did not paint a lot of images for me in regards to the civil-rights movement. Despite that the source is Hollywood, I think that this movie did that for me. Being more aware is never a bad thing...ever.

I don't necessarily see Skeeter as the savior as the black women as the critics have mentioned. Yes, she was the catalyst for the idea of the book but it was Abileen and Minny who were the heroes and saviors in this story. It was they who risked their jobs and their lives to stand up to oppression to tell their story. I find it insulting to their characters that anyone would say otherwise. In addition, one of the issues that I think the critics missed out on was that the heart of this story is the coming together of women from different races and very different backgrounds in an attempt to understand each other and to also make a difference in our world. The male characters were not in the forefront of the story. Skeeter did not run off with the love of her life to have a happy romantic ending. To me, this story is representative of what happens when women cross their social barriers and come together to implement change. Change that can open minds. Change that can alter history.

I am curious to hear what reader's reactions were to The Help, either the book or the movie. Please feel free to leave your comments below.