For Everything There is a Season

"In order to write about life, first you must live it." ~ Ernest Hemingway

Category: adversity (Page 3 of 4)

Keep Going

May 13, 2013 / / 12 Comments

There are very few people who follow my blog or who are even in my life who know the extent of the disaster my life was from about 2001 through 2009. I was in a destructive marriage with a man who was abusive, an alcoholic, had PTSD, and was just a difficult person to live with. A man who decided about two years into our marriage that he did not want children. I had distanced myself from some of my family and many of my friends. I held a job that I loved but yet found very stressful. For some of those years I was seventy-seven pounds heavier than I am now. I had a food addiction and low self-esteem. There were many times when I considered suicide and the threat was real enough that I was hospitalized several times for depression. For a period of time, I was even considered to have bipolar disorder and I was trialed on every class of psychiatric medications that existed. The diagnosis was later retracted by the same psychiatrist who diagnosed me and my mood issues were thought to be the beginning of my autoimmune disorder, coupled with significant environmental stressors. Then the physical symptoms of my autoimmune illness began.

2008-2009 found me very sick with Sjogren’s syndrome. I eventually ran out of sick time and FMLA and lost my job. On the day that my ex-husband threatened me and I thought he was going to be physically violent because he was so drunk, I told him we were done. I got divorced and lost my home. I lost one of my beloved dogs. No job, no home, no kids, no health, no marriage…no nothing.

But wait, I did have something. I had God. I had my family. I had a few friends.

I had myself.

So why am I even bothering to tell you all this six days before I marry my second husband? Because I want people to know. I want to tell anyone reading this who thinks that the only way out is through suicide that there is always a better way out. There is help out there. You can change your situation. The feeling of hopelessness you have now does not mean that things can not get better.

My upcoming marriage has stirred up a lot of emotions recently. Obviously that is due in part to the fact that I am marrying this incredible man who is my best friend and whom I love with all my heart. But the emotions are also there because over the past few weeks, I have stopped to think about where I am and how far I have come. Because at some point I stopped letting myself be a victim. I dealt with my depression and anxiety. I saw a therapist. I developed a positive attitude. An attitude that got me through some pretty dark days. I worked on my relationship with God and with myself. Step by step I made changes in my life that enabled me to be a whole person rather than the empty shell of one that I was during those years.

I still struggle with health issues. I still struggle at times with my self esteem. But at the end of the day I like the face of the person looking back at me in the mirror. Sometimes it is hard for me to think back on the past and even believe that was me. However I have to look back from time to time because those experiences have helped make me the courageous and determined individual I am today.

I am at peace.
I am happy.

So please don’t give up. You are worth more than the sum of your bad experiences. God has put you in this world for a reason. The reason may not be apparent to you now. It may never be apparent to you but I promise you, your presence in this world will make a difference to somebody.

Be strong.
Keep going.

City Of Courage

April 28, 2013 / / 2 Comments
“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. ” ~ Christopher Reeve
 

On April 15, 2013, a terrorist act was committed on the people of Boston, Massachusetts as well as on the United States of America. Two young men, ages nineteen and twenty-six, decided for whatever reason, to bomb the finish line of the Boston Marathon. Three people were killed at the finish line and another person was killed by the suspects several days later. Two hundred and sixty-four people were injured. Lives were lost. Limbs were lost. Families were torn apart.

The day of the bombing, I had just shut off the television to go and do some housework. My fiancé called from work to tell me the news. He told me to turn on the television. I was in the middle of something at the time and was distracted. I thought he didn’t know what he was talking about. How could there be a bomb at the Boston Marathon? Not my Boston. Not our Boston.

Five minutes later I realized that my fiancé knew exactly what he was talking about. The horror was all over the news. Pools of blood on the ground and people running in terror. Fear gripped me as I tried to recall in my mind if any of the runners we knew were running that day. The fear continued as I ran through a list in my head of all the friends and family we knew who lived in Boston and the surrounding area. What if one of them had been killed?

I also had other worries. Two bombs going off in Boston could mean what next? Was the state under attack? Hell, was the country under attack? There were so few details at that point and living under two hours from where this attack was taking place did nothing to calm my fears.

Cell service was down at times in the Boston area. Thank God for Facebook. I was able to find out that all of our loved ones were safe and sound. Prayers thanking God were whispered. For the rest of the day and the days following, I continued to watch the story unfold. A story that is still unfolding today, almost two full weeks later.

Boston is a special place to my fiancé and I. Besides having loved ones in that area, it is my fiancé’s hometown. As a child, I dreamed of living there and any road trip east from my western Massachusetts home to see the Boston Red Sox play or to visit the Boston Science Museum was special. Over the past five years, I have spent more and more time in the city. I used to see a medical specialist there and I frequent a Sjogren’s Syndrome support group on a regular basis. Since Chuck and I have been together, we have spent a lot of time exploring the city. It helps that I have my own personal tour guide who knows how to get to almost anywhere in the city! It has become a special place for us and one that Chuck still calls home.

When the bombing happened, I felt like someone had attacked our home. I didn’t know any of the people killed or injured but yet, it felt personal. I remember the devastation I felt on 9/11 and again during the Newtown, CT tragedy, but this was different for me. This was my home state. Boston may be over an hour and a half away, but those were my people that were hurt and killed. Those were my streets that carry the red stains of blood from this cruel act.

Yesterday Chuck and I went to a scheduled Sjogren’s Syndrome support group meeting at Tufts Medical Center in Boston. The meeting was in the morning and we planned to spend the rest of the sunny day walking around the city, which included paying our respects to those who lost their lives and were injured. We didn’t know for sure if there was a place at or near the finish line site to do this but we wanted to try. Chuck printed up a photo of Boston he had taken years ago and superimposed a quote about strength and adversity over the photograph. Something that may bring a little comfort to anyone who reads it.

There was a makeshift memorial right around the corner from the finish line in Copley Square. It was quite the scene. There were still news trucks lining the street and all of Copley Square had different memorials. There were pairs upon pairs of sneakers hanging by their laces from the fence as a tribute to the runners. Flowers, stuffed animals, and Boston sports caps abound. It was truly a tribute to those fallen and those injured.

As I was walking amongst the displays, it struck me. I was shoulder to shoulder with people. The area was very crowded but yet, it was quiet. I have never been in a crowd of people that was so quiet. Copley Square, Boston and the loudest sound you could hear was just the cars driving by. You could hear the hushed whispers here and there between people. A man telling a woman that it was OK to cry. A father instructing his daughter where to place her beloved stuffed owl that she wanted to leave at the memorial. You could hear the quiet sniffles. You could see the tears falling from underneath the lower rim of people’s sunglasses.

This was a sacred space.

Copley Square, Boston is no longer a place of fear and terror. It is now a place of remembrance, respect, and solidarity.

We then proceeded around the corner to stand on the curb at the worn, painted finish line. I looked across the street to the boarded up store windows that were smashed by the explosion. I looked at the storefront of a shop where injured people made their way into after the explosion. My mind flashed back to the explosion images I had seen on television. As I stood on that curb I couldn’t help but think of how it must have felt to be one of those spectators or one of those runners.

The fear.
The chaos.

Ordinary citizens enjoying what should have been an ordinary day.

Before evil took over.

Before that evil was then obliterated by the tenacity and courage of all the men and women of Boston, Massachusetts.

I said a prayer.

After leaving Copley Square, we decided to head back towards the Boston Public Gardens and Boston Common and include a pit stop for lunch along the way. As we were strolling along the Garden, I was struck by the amount of people out and about. People from the city, and who knows where else, enjoying the warmer weather. Taking swan boat rides. Playing frisbee. Single people, couples, families, and pets just enjoying the gifts that this area of the city provides. Showing their resilience while at the same time making a very strong statement.

They were reclaiming their city. They are not going to live in fear of the evil that descended upon Boston, as well as the United States of America, on April 15, 2013. Life is going to go on and the City of Boston is going to emerge as a stronger people. So thank you Boston. Thank you for showing those of us who do not live within the walls of your city what it truly means to be tough and courageous. Thank you for showing us that in the face of evil, human compassion and love will triumph. Thank you for being “Boston Strong”. Thank you for being heroes.

Photo Courtesy of Chuck Myers: http://myerscreativephotography.zenfolio.com/

Hang On As Tight As You Can

December 27, 2012 / / 3 Comments
 
 
“I’ll lean on you and you lean on me and we’ll be okay.” ~ Dave Matthews Band
 

It is the day after Christmas and I am sitting here thinking of all the blog entries I want to write. My writing has taken a nose dive recently for a variety of reasons and I can always tell when it has been far too long since I have done any writing. Whole sentences and paragraphs start to form in my head in the middle of the night when I am fighting my enemy, the evil insomnia. Or I will be having a conversation with someone and sometimes find my mind wandering to all the thoughts in my head that I want to get written down.

Today is my day to get my mind and spirit back to my passion. To be honest, over the past month or so, I have been so distracted and overwhelmed, that I couldn’t even concentrate long enough to put all of those sentences and paragraphs together. But like so many other times, it was my fiance, Chuck, who gently reminded me with one of his Christmas presents, that writing is the one of the things in this world that I need to do.

He is so good like that; paying attention to what is going on with me and supporting me. I used to worry that because of my illness, he gets the short end of the stick, having to be the strong one more often than not. We have only been together a little over two years and we have endured our share of challenges, in regards to life, my health and, as all couples do, our relationship. Usually though when some type of challenge faces one of us, the other person is in a good enough place to be a strong support. But then what do you do when:

One of you gets so sick that you are hospitalized for five days. And more testing and uncertainty follows.

One of you is having a lot of stress at work.

Your dog gets sick enough to require four vet visits in one week and multiple tests.

One of your cars breaks down.

One of you has been hurt by someone you love and trusted.

One of you is faced with the possibility of another autoimmune illness.

One of you has a sister who undergoes life changing surgery.

One of you is told that you have a growth on your gallbladder that has a remote possibility of being malignant and you have to make a decision about whether it is worth the risk of surgery.

Christmas is fast approaching.

One of you is told that your mother is dying.

And all of this happens within the time frame of one month.

So what do you do? What do you do as a couple with so little time under your belt when both of you are stressed beyond limits that you think you can handle?

They say that love conquers all but I am not sure I agree with that anymore. Rather, I think love, friendship, determination, faith, compassion, selflessness, and most of all communication conquers all. Because once you are committed to someone, experiencing crisis is no longer a solo event. You have to be able to not only support your partner in their struggles, but deal with your own feelings as well. It is easy to get caught up in your own challenge of just getting yourself through the day, but it’s no longer just “your” day. The day belongs to both of you.

I cannot speak for my fiance but for myself, in the past month, if I was trying to be there as a support for him, I rose to the occasion. Almost to an extreme. If I knew he was stressed out and then asked me how I was doing, I would sometimes downplay something going on with me. I think there is a time and place for that, depending on the seriousness of what which each person is going through, but I am here to say that for the most part, it doesn’t work well. Because he knows me so well, he then worries more. Being a martyr for your partner’s sake is not the answer. Open and honest communication is.

We are by no means on the other side of the current challenges that we face and we may not always get it right, but I can say what has worked well:

*We ask each other “how are you today?” It seems like such a basic question but if you are in a relationship, think about the last time you actually asked your partner that question.

*By sitting down together, we have learned to prioritize the most immediate needs of the week, day, and even hour. It may be him traveling to Boston Christmas morning to spend time with his mother, knowing that I physically can not make the trip that day. It could be me doing some Christmas shopping for him so that he is freed up to deal with other things.

*We make sure we connect as frequently as possible and make each other the priority right now. I will actually consciously have to stop whatever I am doing sometimes and make sure that I have not been so wrapped up in my own problems and stress that I have not made myself emotionally available. On the flip side, I will also ask him if he needs time alone.

* Make sure we laugh together every single day, at least once.

* Depend on other people. Historically, both of us are terrible at this and the events of the past month have taught us that not only is it okay to ask for help, but that you also need to know who you can depend on for help. Especially when you need a listening ear. One human being cannot be all things to another.

Finally, and maybe most importantly, we hang onto each other as tight as we can.

Reclaiming My Voice

November 5, 2012 / / 6 Comments

 
“Music exalts each joy, allays each grief, expels diseases, softens every pain, subdues the rage of poison, and the plague.” ~ John Armstrong
 
 

Grief is a sneaky invader; creeping up on you when you least expect it sometimes. Maybe it makes its guest appearance after a random conversation or during those still hours when the house is quiet. Sometimes grief is over the loved one we have lost. Sometimes grief comes in the form of losing something that we were once capable of doing.

My invader made a visit last Thursday. I wasn’t prepared for it but then again, are we ever really prepared?

I understood the circumstances of why I was feeling particularly sad last Thursday. I had been spending some time last week with a friend of ours at doctor’s appointments. He had asked me to be, as a nurse and as a friend, a second set of ears in preparation for a major upcoming surgery he was having this week. A surgery he was going through without his wife, who suddenly passed away at such a young age; almost two years ago.

His wife, my friend.

Of course I have thought about my friend in these past two years, but it has been a long time since I have mourned her. I had gone through my grieving process and I had chosen to remember her with fond memories and joy. However last week made me stop and think about how very unfair life can be sometimes. It didn’t seem right that he couldn’t have her there with him by his side. What a loss this world experienced when she left us. The grief felt palpable once again.

Once I came home from the second day of doctor’s visits, the house was quiet when the grief hit me and I decided that maybe the best way to deal with it would be to go on my computer and browse through some photos and videos of my friend. Remember her with laughter. Like the photos she took of me eating soggy grilled asparagus. It looked like I was eating worms. Don’t ask! I eventually ended up scanning YouTube for videos as our church posts its services and choir performances videos on there.

Choir.
A tough place for me to be lately. Actually, I haven’t been there as much.

My friend was in the choir and she was the one responsible for getting me involved in our church choir. Singing for God has been one of my steadfast passions until recently. I say recently because not being able to sing for the past few months, due to struggles with my autoimmune illness, has been a loss for me. Sometimes the difficulty has been with my lungs, fatigue, the dryness of my vocal cords, or issues with reflux affecting my throat. The fact that this has happened to other Sjogren’s patients has just discouraged me all the more. A lot of the time, I truly cannot physically sing and sometimes it is just energy that I cannot afford to spend that particular day or week. Although I have to be honest, I do wonder if occasionally I am just so exhausted and discouraged, that it is just easier to sit it out. Don’t tell anyone though because most of the time, people don’t understand that part of having a chronic illness unless they have experienced it themselves.

As I was looking through these church videos, I came across a YouTube video of my fiance and I singing the song “Mary Did You Know?” at our church Christmas cantata last year. A cantata dedicated to my friend’s memory. A song that has become significant to me because I had to overcome respiratory issues to be able to pull off that performance. It was a good performance. And I was grief stricken again. Because when I heard my voice on that video, I felt like physically, I wasn’t in the same place as last year. Actually I know I am not. My illness has taken more from me physically this year, including at times, the quality of my voice. Is that selfish? Maybe. Because let’s face it, compared to my friend not being here, it’s not as significant. But it is still my loss.

Fast forward to Friday. I am sitting at a Women of Faith conference in Hartford, CT. An incredible event that you will probably hear more about at a later date. I am thoroughly enjoying listening to a Christian comedian. A man named Mark Lowry.

Mark Lowry.
Why does that name sound familiar?

I decide to stop torturing myself trying to place the name because this man is so funny, I don’t want to miss a word that he says. He’s that good.

What I didn’t realize, until he opens his mouth to do so, is that this man can also sing. What a voice on him! What a talent to be able to make people laugh and to be able to sing like that.

What I also didn’t realize? That this man write songs.

How do I know this? Because at the end of his performance, he sang a song that he wrote. A song that over thirty recording artists have performed since he wrote it.

The song?
“Mary Did You Know?”

Seriously? Come on.

Now you can say what you will about coincidence and such but here are the facts. I had tickets for this conference for months, but did not know that the man who wrote the lyrics to this song was going to be there. I had not watched the video of that Christmas cantata in at least eight or so months. I also did not know about my friend’s surgery until last week.

So I don’t believe this was all coincidence. I am typically not a person who makes radical proclamations and I certainly do not typically write about them publicly online; although maybe I will more often now.

I believe this was God speaking to me.
I believe this was my friend speaking to me.

I believe they were telling me that as long as I am not harming myself, to keep singing as best as I can, when I can, but to push a little harder.

I believe they were telling me to stop comparing myself to other people. To get back to my speech therapy exercises, to do some research online, to stop reading about what other Sjogren’s patients can and cannot do for a while.

And finally, I believe they were telling me to believe a little less in my illness and a little more in myself.


































































































Photo Courtesy of Google Images

Medicare, Blue Cross/Blue Shield, and Me

September 21, 2012 / / 5 Comments



Found this kind of funny since I have a busted up foot and have no health insurance. Well, at least at the beginning of the story…

 

Note: This essay was written Thursday September 20,2012

My best friend, who also is disabled and struggles with her own chronic health issues, recently made a statement to me in reference to how I was feeling about unexpectedly not having health insurance. She said that for people like us, having your health insurance abruptly ripped away from you is like a person suddenly being laid off from their job. Those of us who are disabled or have chronic illnesses may depend on our health insurance every single day just like most people have to depend on having an income from a job every single day. Once that gets taken away from you unexpectedly, how do you feel?

Anxious.

Angry.

Fearful.

There is a long story to why I have lost my health insurance twice since July 2012 and when I have more energy and more answers, I will blog more about my experiences with the Social Security, Medicare and disability systems. Today, I just cannot because the system has me completely exhausted and worn done and I want this entry to focus on the miraculous thing that happened today. A thing that despite all the negative things we have to say about the health care system, the insurance companies, and the government, proves that there are good people out there who care.

The short version is this. I switched from my ex-husband’s health insurance that I was on as part of our divorce agreement to Medicare Part B July 2012 as I found out I was being dropped from his coverage. I had been eligible for Part B for quite a while but chose to stay on his as it had better coverage and was more affordable. I had notified all parties involved about my decision and took all the appropriate steps and was told that if and when I was dropped from my ex’s group coverage, I would be eligible for Medicare Part B through special enrollment which is what I did. Because of my extensive medical care needs and Sjogren’s specialists that are only located in CT (I live in MA), I also signed up for a Blue Cross Blue Shield (BCBS) PPO Medicare plan; known as a Medicare Advantage plan. This became my official insurance for everything. It cost a lot more for premiums, co pays, drugs, labs, etc. but was my best option at the time.

Social Security Adminstration (SSA) made a huge error and dropped my Part B in mid July which in turn dropped me from BCBS. To this day, nobody can explain the error. It was a fiasco. They still owe me large sums of money that they mistakenly took from my monthly SSDI checks. Errors they have admitted to but have yet to set straight. However the health insurance was put back in place after approximately two weeks and life went on.

I contacted Congressman’s John Olver’s office in western Massachusetts to assist me in getting this money back. They began to diligently work on the issue but meanwhile once again, without notice, my Medicare Part B was dropped in September without an adequate explanation except to be told there was a systems error. This of course prompted BCBS to drop me from their plan which is standard procedure, leaving me with no medical coverage at all. I had no notification except from my local CVS pharmacist who called to notify me that one of my refills did not go through because my insurance was denied and then a voice mail from SSA saying “you no longer have Part B, I don’t know why, and don’t know what to do about it.” I was unable to connect with my case worker at SSA however I was able to speak with the congressional aid at Congressman’s Olver’s office who started to follow through on the issue for me.

Meanwhile I was dealing with an exacerbation of my Sjogren’s syndrome which required an increase in medications and more lab work, an orthopedic appointment of a six month old sprained ankle that had gone bad, and an MRI. I started physical therapy for said ankle and then had to stop as I had no insurance and was worried the issue won’t get straightened out as by this point I didn’t understand what the issue was or what was going to happen next.

I have learned to handle stress very well. I have to with an autoimmune illness because stress just makes my symptoms worse. But not having health insurance puts me in sheer panic mode and I had my first panic attack in years. I became afraid to answer the phone or check the mailbox because it was always bad news that just made my situation worse and more frustrating. My days became filled with dealing with emails, phone calls, documenting every single thing said or done, working with health care providers and the pharmacy; the list goes on and on.

After several straight days of dealing with this, yesterday I heard back from the Congressman’s office who told me she got me reinstated in Medicare Part B but being the skeptic I am, I knew I would not feel sure about this until I called BCBS the next day to get reinstated with them because they would check the system and I would know for sure I was all set.

So today I called and sure enough, according to the system, I did not have Part B and could not get my BCBS back. I told the rep how I had to borrow money to pay for my medications yesterday and had to cancel appointments which was concerning since I just found out that my MRI showed a torn tendon in my right ankle. Also I had missed an important eye doctor appointment today. She promised me that she would flag my file and watch the system for my name to come through as maybe I went into the system late yesterday at SSA and might come through tomorrow morning. I knew better though. It wasn’t going to be that simple.

So I hung up and just cried. I asked God why can’t the people in charge just make this right so I can get the care I need and so I can not feel so riddled with anxiety to the point where I feel like I am on the verge of panic? Don’t they realize because of my health issues how vulnerable I am? I have utilized every resource I have. I prayed for the strength to just keep going.

And then the phone rang. I hesitated to pick it up because well, it’s always bad news lately. It was a woman named Judy from BCB. She told me that effective today I will be fully reinstated onto my BCBS plan. I told her that I had just spoken to someone from BCBS who said I wasn’t in the Medicare Part B system yet so that couldn’t be done. This woman said that yes, that is true what the previous woman said and that that same woman had then contacted her and that the priority to them is that I receive the medical care I need. And apparently she was the one that was going to make that happen.

I started to cry, a lot.
Because I had health insurance again.
Because I could get the care that I needed.
Because someone cared enough to go to the edge for me.
I was no longer just a number.
I was a human being.

She said my coverage will be retroactive to July 1st (as it should be) and she will check to make sure that none of my recent claims will be denied. She said she needs twenty-four hours to get my prescription coverage in place but to bring all my scripts, including ones I paid for out of pocket so far, to CVS and they will be covered effective tomorrow. She said to make sure I attend my physical therapy appointment tomorrow and to be assured that I now have medical insurance. She will deal with the rest. She was my angel.

This is what happens when God is listening and when you are fortunate enough to find your way to the compassionate people who work in the health insurance industry. Thank you Judy.

Addendum: I called Blue Cross/Blue Shield again today September 21st to reconfirm that I still have an active policy because well, it just seemed all a little too good to be true. And yes, I still have coverage. So today I am off to get a prescription and another much needed physical therapy session. God is good.

























































Photo Courtesy of Google Images

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