For Everything There is a Season

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Doctor, Please Listen To Me!

October 4, 2011 / / 7 Comments
Although I talk a lot on this blog about my experiences with an autoimmune disorder called Sjogren’s Syndrome, I have dealt with and currently still deal with a multitude of other medical diagnoses. It would appear that when it came to the luck of the draw in the God designing Christine department, I got the short end of the stick. I was not a particularly sickly child, but once I entered my early twenties, it seemed like every few years a new medical problem reared its ugly head. I am not talking about common stuff either. Oh no, I got the wacky and unusual stuff….Hodgkin’s Disease (which is a lymphoma), AV Nodal Reentry Tachycardia (a defect in my heart’s conduction which required surgery), Factor V Leiden (a genetic blood clotting disorder), and of course the Sjogren’s Syndrome. Throw in some more common diagnoses like Hypothyroidism, Polycystic Ovarian Syndrome, etc. and you have a nice array of specialists that I have to deal with on a regular basis.

There is a point to mentioning all this though. Because of this ridiculous amount of exposure to the health care system as a patient and most significantly because of the challenges I have faced in dealing with doctors regarding the Sjogren’s, I have a very (and I mean VERY) low tolerance now for inadequate and impersonal medical care. As a nurse, I have always been a strong advocate for my patients; at times, even getting myself into a little hot water because I challenged my patient’s doctors when I felt that they were not being attentive or appropriate in their care of my patients. However as a patient, I was not always good at this. I got intimidated easily by my own doctors and always trusted that they knew what was best for me.

Over the past few years this has changed dramatically because, as I mentioned earlier, I struggled so desperately to get the Sjogren’s diagnosis. Heck, I struggled to even get someone to believe there was something wrong with me. And in the end, I listened to my own inner voice. I was relentless in my quest and I finally got an answer.

About a month ago, I woke up with severe abdominal pain that had started a few weeks previous to that day but I had chalked it up to problems with my menstrual cycle. On this day though, I felt that something was really wrong. I called my gynecologist who despite his somewhat impersonal manner, had never done wrong by me. By the time I saw him, I was doubled over in pain. After examining me, he decided I needed an ultrasound which could not be done until the next day. He would not give me anything for pain and said that Tylenol or Motrin should help. It did not.

The day after the ultrasound, I called the office as I was still in some of the worst pain of my life (which is saying a lot!) and I was looking for my ultrasound results. I was told by the nurse that there was small cyst on my ovary that would not be causing me this degree of pain and I needed to follow up with my primary doctor. And of course it was a Friday. I told her that I thought it was gynecological related and as I had issues similar to this previously, but just not as severe. Nope, I still got passed off to another doctor. At this point, I have been in severe pain for forty-eight hours and wished I was dead. My primary doctor was not in the office that day and I decided to go to the emergency room.

The end result of this trip to the emergency room was that I was dehydrated and a CT Scan showed that not only did I have a cyst on one ovary, but I also had a ruptured one on the other ovary therefore validating the high amount of pain I was in. I was told that it would take at least a few days until the pain would subside and they gave me pain medication to get me through the pain and told me to follow-up with my doctor in three days.

I never did go back to my gynecologist. I followed up instead with my primary care who I felt had enough knowledge to see me through the rest of this crisis. See because the problem was, I no longer trusted my gynecologist for many reasons. He knew me well enough to know that I would never be doubled over in pain unless something was really wrong. He did not adequately address my pain issues. He left me like that for over two days and then when I sought his help again, he dumped me on someone else when it was a gynecological problem all along.

I can’t let something like this go. There have been a few rare instances in the past few years where I have disagreed with the way one of my doctors has handled something and after having a discussion about it, it was resolved. But when I looked back to all my interactions with my gynecologist, I realized he sucked as a doctor. My visits were always rushed. I always felt like I was bothering him when I had questions about my treatment. He never seemed to want to address the fact that I have a mother with a history of both ovarian and breast cancer; therefore putting me in a high risk category. He didn’t take  time to do any teaching with me. He knew very little about how significantly my other medical diagnoses were affecting my life. He just didn’t seem to care.

I don’t need each of my doctors to hold my hand and be my friend. But I DO need them to treat me as a person; a person who has been through a hell of a lot medically. I deserve to be informed. I deserve for them to be accountable. I am very well aware of how difficult it is for doctors to practice with all the insurance regulations and productivity requirements. But you know what? There are doctors out there who DO listen to their patients. I know because some of them are my doctors. Never in a million years would my endocrinologist let me leave her office in the kind of pain I was in that day without doing something further.

So what am I to do? What are we to do as health care consumers? We need to stand up and make ourselves heard. We need to tell those that hold our very lives in their hands that we deserve the very best that healthcare has to offer. How do we do this? We screen our doctors before we become their patients. We go to our appointments organized with a medication list and a list of our questions and concerns. We take control of our own health by learning about our various conditions and then committing ourselves to truly getting better, even if it means changing bad lifelong habits. We listen to our instincts when we feel something is wrong with our bodies. We don’t let doctors rush us through office appointments or procedures. When we feel that we are not getting what we need from our providers, we look elsewhere. And we keep looking until we find what we need and what we deserve.

The outcome of my little doctor fiasco was that I immediately started looking for a new doctor. I know there is a stigma attached to patients who “doctor shop” and you know what? I don’t care. You shouldn’t either. It is your body, your life. I am not saying that if issues arise, but yet you trust/like your doctor, that you shouldn’t try to work it out. You should. But don’t let things go. I have been wrong a few times thinking I knew more than my doctor but a good doctor will respect that. It took me changing doctors twice to finally get an accurate cancer diagnosis with the Hodgkin’s disease and five rheumatologists to not only get the Sjogren’s diagnosis, but also to treat it properly. In both instances I am glad that I did not just sit there and trust that the doctor knew best.

I saw my new provider for the first time today for a procedure. She spent quality time with me trying to make sure she had a good history. She asked about my Sjogren’s, how I got diagnosed, and how it has affected my life. She did some teaching with me about not only the procedure but about the possible implications of the results. She was patient. She validated my very appropriate anxiety. She treated me like a person and not just one of her many afternoon appointments.

She knew what she was doing.

She cared.

It was exactly what I was looking for.

Photos :Courtesy of Google Images

Sjogren’s and Disability

September 29, 2011 / / 18 Comments
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.
Persist!
You can do it.
Photos Courtesy of Google Images

Love Notes

September 25, 2011 / / 3 Comments

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.

Second Chances

September 13, 2011 / / 4 Comments

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. And…it 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.

Safe Haven

September 11, 2011 / / 4 Comments
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.
Music.
Laughter.
Prayer.
Love.
These are the things which truly heal… 

Photo: Courtesy of Chuck Myers

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