#NHBPM Day 15: This one’s for you, baby


Today’s Prompt.  This one’s for you, baby. Dedicate a song to your condition. Why did you pick that song? Find a youtube or link to a version to embed in your post.

I am a strong believer is going on despite challenges and the blows.  I won’t let RA and fibro get to me. So my song is “Bring on the Rain” by Jo Dee Messina. The lyrics say it all.  

Another day has almost come and gone,

Can’t imagine what else could go wrong.

Sometimes I’d like to hide away somewhere and lock the door.

A single battle lost but not the war.

‘Cause tomorrow’s another day

and I’m thirsty anyway

So bring on the rain.

It’s almost like the hard times circle ’round.

A couple drops and they all start comin down.

Yeah, I might feel defeated,

I might hang my head,

I might be barely breathing, but I’m not dead.

No, cause tomorrow’s another day,

and I’m thirsty anyway,

So bring on the rain.

No I’m not gonna let it get me down.

I’m not cry,

and I’m not gonna lose any sleep tonight.

‘Cause tomorrow’s another day,

and I am not afraid,

so bring on the rain.

tomorrow’s another day,

and I’m thirsty anyway,

so bring on the rain.

No I’m not gonna let get me down,

I’m not gonna cry.

so bring on the rain.

Bring on the rain

Bring on the rain

#NHBPM Day 14 Elevator Blog


Today’s prompt:  Elevator blog. If you were in an elevator with someone and they asked about your blog. What would you tell them?
Make a version for a 30 second elevator ride.
Make a version for a 1 minute elevator ride.
Make a version for a 2 minute elevator ride.

I really like this prompt as it gives me an opportunity to explain my blog to those of you who don’t know it that well.  Of course, the time thing is an issue.

30 minute elevator ride

My blog is about my life with Rheumatoid Arthritis and Fibromyalgia and my life despite chronic illness.  When I was first diagnosed I didn’t quite understand that I could have a normal life with RA and Fibro but after much research, experience and strong will, I have found my medium.  As a result, I want others who struggle with similar issues related to chronic illness to understand that while they may be set backs, your life is not over. A lot has happened in my life since my diagnosis over three years ago, and I don’t just blog about RA and fibro, I blog about other setbacks and other situations because I am only human.  I think that I owe it to the people who read my blog to see more than just an advocate for arthritis and fibromyalgia but I want them to see that I am just as normal as they are. Normalcy is something that so many of us with chronic illness struggle with and while we may not always feel normal, our experiences still are just that.

One minute elevator ride

One day I awoke to my life changed.  After years of struggling with pain and other mysterious symptoms, I received more than I expected – two diagnoses two months apart.  I had both rheumatoid arthritis and fibromyalgia. From the moment I received my first diagnosis, RA, I knew my life would change.  At the time, however, I thought that change would be for the worst.  Here I was 32 years old with a newborn and a nine year old who would need their mother for a long time and I felt like I had just been stripped of everything that made me human. I had two diseases and there was no cure for either.  I also found myself with a realization that I could not work fulltime, spend time with my kids, be sick, attend law school, and a whole lot of other things I had planned on doing. 

The longer I lived with RA the more I understood that if I wanted to continue to have dreams and live them, I had to take a slower pace.  I also had to realize that living with chronic disease did not mean that my live was over. It meant that that some things had to change including my expectations and my lifestyle.  That realization was my wakeup call and at some point I realized that I wasn’t alone in these feelings.  Others felt them too and what took me nearly a year to figure out would be easier for others if I shared my story and that is what I have done – several times a week. I have had setbacks due to RA and fibro and due to life in general.  I think about all the people who reached out to me when I was diagnosed and if not for their experience, I am not sure how I would have made through the first year after diagnosis but I did.  Fellow sufferers and bloggers reached out to me through their blogging about life with chronic illness and when I saw that their lives were close to normal, I knew that mine would be too.  Therefore, I blog to reach out to others struggling with the same anxieties and fears.

Two minute elevator ride

My RA and fibro diagnoses came over three years ago but I had symptoms for many years prior.  Days after giving birth to my son in September 2008, I awoke to the inability to walk and use my hands.   A week later, my family doctor suggested rheumatoid arthritis and referred me to a rheumatologist. Two months later, the rheumatologist gave me a second diagnosis: fibromyalgia.  I felt both relief and defeat at the same time.  I was relieved because I finally had an answer and defeated because there was no cure.  Here I was 32 years, a young mother and I felt like I was 80.  My blog started out as my way to cope.  A year later, it became my pedestal because I had finally told RA and fibro who was boss.  Three years later, I continue blog to help those struggling with the same issues I dealt with when I was first diagnosed and those I continually deal with as RA and fibro patient.  The difference is that three years ago I was scared but three years later, I advocate.  I am still scared but I have learned to fear is merely a setback.  I support, I speak up, I educate and I advocate and for me, helping just one person feel less alone and more educated means I had accomplished so much.  

My message to the people who read my blog is simple – learn to cope and find support.  In the beginning, coping meant that I just need to get through the day but these days, coping means thriving despite RA and fibro.  As for support, I know that the message we convey to others in our lives is important.  If we educate ourselves about our conditions, it makes it easier to express how we are feeling to our families, friends, and medical providers.

I thrive despite chronic illness and I made a decision a while back that for everything RA and fibro would take, I would take something back. People always give you advice about not letting the disease define you but I tell people that the disease does define you because it forces you to change your life to accommodate it.  Your life becomes about making choices that focus around living with chronic illness and sometimes, the best thing you can do to thrive is understand that some things are just out of your control.  However, that does not mean to everything is out of your control. You always have it in your power to respond positively and fight back progressively. Some more advice – Don’t sweat the small stuff and understand that your expectations about yourself and for others in your life have to change.  Count your blessings every night and think about all the things you have accomplished despite chronic illness.

With my blog, I know that it is so important to reach out to others who understand what you are going through but it is also important to let others reach out to you. From personal experience and as an advocate for both fibromyalgia and arthritis, I know the power of advocating for yourself.  My message is simple: learn all you can about your conditions, express your needs and concerns clearly, open up about the how the disease affects you, learn to cope and manage your disease and make a choice that your life isn’t over. I hope that I can convey these things clearly and allow people to see that I am not the exception to the rule but that I am just like them – struggling to find answers.  Life gave me lemons and I made a choice to throw them back and that is my story and I am sticking to it.

I am also human and that is why there is more to me that just RA and fibro.  I lost my bother last year to a rare form of cancer, one caused by asbestos exposure.   As I continue to advocate, I pray for the strength to advocate for others affected by mesothelioma and while right now, I am not strong enough to do this, I will be someday.  When that day comes, I will advocate to the best of my ability but for now, I advocate for fibro and RA in my brother’s memory.  Advocating in his memory allows me to the strongest I have ever been and so when it comes time to stand up for those affected by asbestos exposure and against those who knowingly expose people to asbestos, I will be ready.

This post is post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9JI If you want to participate in this post, leave a link in the comments to your post.

NHBPM Day 12: Teach a Class


Today’s prompt.  Teach a class. What’s something that you’re uniquely great at and could teach a class on? Write the tutorial in a blog post. Bonus points for images, links to resources, and video.

I could teach anything related to law especially for paralegal and legal studies students.  I am definitely a fan of the law but my new passion is real estate law especially the drafting of purchase and lease agreements.  I did not realize how good I was at doing this until I actually had to do it.  I have many years of experience in the legal field and I have drafted documents of all sorts including domestic issues, civil complaints, and estate planning documents and various forms and documents for various courts.  Most likely, I could teach any type of legal writing class.

So, if the class I am teaching involves the drafting of a purchase agreement, here goes for the tutorial.

In order to protect and further client interests when drafting purchase documents, legal professionals must create strong and long lasting agreements that benefits all the parties involved. Further, they must be in compliance with the law. A well structured purchase agreement places an emphasis on clear and unambiguous legal terms and such summarize principal terms that will be included throughout the agreement.  Often, the best approach involves simple language and includes provisions such as assigning contracts and liabilities, buyer and seller representations, conditions, and indemnities to protect all sides after the closing.

Your starting point should be boilerplate language that you would find in all purchase agreements and work from there to prepare a simple agreement.  Such provisions include:

  1.        Term sheet, parties and recitals.
  2.        Purchase and sale of assets.
  3.       Representations and warranties.
  4.       Covenants.
  5.       Conditions present
  6.  Indemnities.

All these have more specific clauses to them but for purposes of this post, I won’t go into the specific portions of the above sections.  The agreement outline outlines the terms and responsibilities of the buyer and seller. It is a contact in which one person makes an offer to buy from the seller that includes a certain price and if the seller accepts the buyer’s offer, a binding agreement is created.  An offer maybe subject to certain conditions, such as being conditional upon the buyer obtaining satisfactory financing or a satisfactory home inspection.  If conditions are satisfied or waived with a specific period, an offer becomes a binding contract and the purchase agreement is prepared. Hence, we work from the boilerplate template that is similar to the outline above.

Now that I bored you the specifics of what I often do at my job that I actually enjoy, I can tell you that I have eleven years of experience in the legal field.  Having that experience, including the ability to research and write, has been a godsend in my life, not only professionally but also personally.

If you could teach a class, what would it be about?

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

NHBPM Day 11 – If it’s not broke, don’t fix it


Today’s prompt: If it’s not broke, don’t fix it. What is working well in your community, healthcare, blogs, social media, or your work in particular? What do you like about it?

I manage and advocate for two online communities for Alliance Health, Arthritis Connect and Fibromyalgia Connect.  Support groups like the ones I advocate for offer people a place to give and receive both emotional and practical support as well as an opportunity to exchange information.  When you live with chronic illnesses such as one of the many forms of arthritis or fibromyalgia, you, your families and your friends find these to be a valuable resource for sharing information, getting confirmation about feelings, educate others or to let off steam. One of the things I consider to be most important and that works well as far as my sites are concerned is that if we can just offer people a place to vent and validate their feelings.  I am so big about insisting on judgment free posts.

I often caution members about comparing their pain to someone else’s.  I think that, as humans, we have this tendency to try to compare ourselves to others.  Either it leaves us confused or judgmental.  I tell members that their illness is their alone.  We are all entitled to feel everything we need to feel – our emotions, pain and other symptoms but no one understands that that better than you.  For anyone to explain what it is like for one person versus another isn’t even possible.  Pain is an individual thing and as far as understanding goes, unless someone knows that it is like to live in pain, it can really be hard to sympathize.  

Last year, after I lost my brother to cancer, one of my dearest friends honestly said to me, “I can’t begin to imagine what you are going through because I have never gone through it myself.  However, I am here for you no matter what you need.”  That is about the time I started to understand that people who didn’t live with chronic pain don’t really understand but it how they support us that counts more than anything.  I remember saying to myself after my friend said that, “That is true friend. Honest and loyal.”  No one is required to understand your pain but if they love you, they will support you.  That is something I often emphasize in my communities and it is something that has worked very well for me, as for the communities. In a perfect world, we would all understand each other but in an imperfect world, we can still support each other.

Doing this for nearly two years (two years in February), I have done my research on what makes a support group good.  I have a lot of backing from the people at Alliance Health, as they all have been wonderful, supportive and a great source of information from day one.  I feel both my support groups offer a good supportive atmosphere and while, good is different to everyone, there are certain things that stand out for me.  We, the people at Alliance Health and me, are constantly providing up to date information.  Further, I am always quick to respond to member – a goal of no later than 24 hours.  That is my rule, not Alliance Health. The site provides weekly newsletters, confidently, and information that members are seeking.  We also have access to experts, one those being myself (yup, tooting my own horn) but other community advocates who offer professional expertise.

If you have not had a chance to check out my sites, please do.  

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J  

Last, Happy Veterans’ Day. Thank you for all those who have served our country, past and present. 

 

 

 

NHBPM Day 9: My Personal Brand


 Today’s NHBPM prompt: My personal brand. As a Health Activist, you are a front-facing leader. What do you imagine you look like to your readers? What qualities do you possess? It’s ok to toot your own horn today – you have full permission to indulge. And don’t hold back.

A few years ago, I didn’t see myself in an advocacy role and the weird thing is that the opportunity was actually thrown into my lap.  I didn’t seek it but someone else thought I would fit the part and I am proud that I have not let that person down.  While I found a new talent for understanding medical information, advocacy is as far as I will take this.  Growing into this role, I never once believed its potential but here I am trying to get a message across. That message for me is tell fellow chronic illness sufferers that they are not alone when it comes to navigating the health system, learning about their own illness and getting others to understand. 

If you are trying to be a health activist or advocate, you should know that it has to come from your heart – at least, that is the way I see it.  It also requires commitment, including time and a willingness to get out there.  You must train yourself to be a good communicator because if you cannot get your message across and say the things that people need to hear, you will find yourself alone on this one.  Activism also takes courage, initiative and creativity.  Think about it.  If you believe so passionately about something, you have to be willing to stand up for it, be willing to take the initiative to be a leader and you have to think outside the box.  Passion, a positive attitude, an ability to solve problems and vision are qualities that make a great activist.   Your passion lies in your attitude and your attitude has to be a positive one and if you believe in your goals, you can make them happen.  Being a problem solvers mean you solve problems rather than letting them get to you.  Last, a true visionary seizes an opportunity and does it with drive and passion.  The late Steve Jobs once said that: “If you are working on something exciting that you really care about, you don’t have to be pushed. The vision pulls you.” 

Since I am allowed to toot my own horn today, I am proud of the role I play – here at my blog, at Arthritis Connect, and Fibromyalgia Connect.   My role isn’t one that pushes for something to happen (i.e. ban or limit something).  My role is one that provides support and facilities an environment of understanding.  

Activism and advocacy are terms used interchangeably and while they overlap, they have different meanings.  That distinction is dependent on your involvement in a cause. Activists are people who take an intentional action to bring about social and political change.  For example, Rosa Parks challenged racial segregation.  An advocate is someone who speaks on behalf of someone else or on a behalf of a group. Angelina Jolie is a UN Goodwill Ambassador who uses advocates for refugees.  So, I am an advocate who speaks up for those needing support as they navigate a life with chronic illness.  And I am very proud of that. 

I never once imagined myself affecting people’s lives in such a positive way.  Your comments here and at my advocacy sites remind me that I am making a difference every day.  I stumbled in the beginning but in time, I evolved with the role. In a recent post, I touched a bit on how much I have grown into this role and like everything else in my life, I take personally.  If I make a decision to take something on, I take it on with the best of ability.   In the beginning, as I muddled along as the new advocate for a new arthritis website, I did what I needed to do feel useful and important because RA and fibromyalgia had, in a way, taken that from me. The more I grew into the role, the more I felt a sense of accomplishment – and not the kind you get from achieving a goal, but the kind of accomplishment where you feel like you have touched a life.  As time went on, I realized I was good at what I did, and whether it was reaching out to my blog readers or the members of my advocacy sites, I was darn good at it. How about that for tooting my own horn?  I had taken something I knew and turned it into something I became an expert at and I am pretty pleased with that. 

It is a good thing I became an expert advocator because my biggest test came after my brother was hospitalized.  He had cancer and by the time it was discovered, he was too far gone to be saved.  I found myself fighting for my brother like I was fighting for my own life. I found myself fighting with insurance companies and medical professionals.  I spent many long nights reading up about treatment options and many long days reaching out to experts on the topic. I did everything I could but my brother’s cancer battled ended five days before Christmas and six days before my 35th birthday.  It took me awhile to grasp what I had happened and in the beginning, I felt like I had failed him.  It took some time but I finally came to terms with this and I realized that I was there when he felt the most alone he had ever felt in his entire life.  I stood up for him when he couldn’t stand up for himself. I was his voice when he didn’t have one.  I did everything that made him proud to call me his big sister.  As I advocate, I advocate in his memory.  My brother saw me fight every day for him and I continue to fight for him in the best way that I know how. There are medical bills that need to be paid and other financial business that my brother left behind so my advocating for him hasn’t really ended – it has just taken a different tone.  What I know is that my brother relied on me to be his voice and his strength when he didn’t have a voice and his strength ran out and it is something I will continue to do in order to keep his memory alive.

Advocacy has changed my perspective and I see success in emails, voices, and faces of those I have reached. I don’t remember wanting to this role but now that I have it, I like how it feels.  I don’t know how my readers perceive me but I don’t see myself as a super advocate or as a superwoman.  However, sometimes I think some people in my life think I am made of steel but contrary to that, I am not. I believe in being real and in showing people that your own strength is not something you can always count on and that is okay. Sometimes, you need someone else to be strong for you and there will be times when you will have to be strong for someone else. Strength is something no one has to take on alone.   

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

NHBPM Day 8: Three Truths, One Lie


Today’s NHBPM prompt.  3 Truths and 1 lie. Tell us 3 things that are true about you, your condition, your Health Activism, or your life. Now tell us 1 lie. Do you think we will be able to tell the difference?

I like today’s prompt but I don’t have a poker face so let’s see where how well I pull this off. Just so everyone knows, I am a horrible liar.  I lie better by email and sometimes by phone but if you look at me while I am lying, I am busted pretty easily busted.  So here we go, three truths and one lie – let’s see if you can pick out the lie.

  1. If RA and fibromyalgia didn’t come into my life, I would have a law degree my now and would be practicing law.
  2. In college, I was student government president.  However, I don’t like politics.
  3. Growing up, I was a girly girl so raising boys has been a complete shock to me.
  4.  Cancer came into my life twice and it has forever changed me.

For those of you who are frequent readers of my blog, two of these would stand out for you as true.  Two more will leave you wondering if I am telling the truth.  So can you figure out which of these is the lie?

Here’s some information about the three truths and one lie above.  The truth will be revealed and the lie exposed.

If RA and fibromyalgia didn’t come into my life, I would have a law degree my now and would be practicing law.  This is most likely true.  I had planned on taking my LSATs before I had found out I was pregnant with my now three year old.  When I found out I was pregnant, I planned on waiting taking my LSATs when my son was a few months old and starting law school within six months.  I had plan all ready and I never expected to hear the words “rheumatoid arthritis” two weeks after my son was born so my plans changed.   The funny thing is that I thought I would have regrets but I don’t.  I went to pursue a master’s degree in legal studies and I started advocating. The master’s degree is now complete and I have been advocating for a year and a half.  In my case, for RA and fibro took, I took something back and that’s why I don’t have any regrets. Further, if RA and fibro never came in my life, my relationship with my children would have suffered because law school is a big commitment so everything worked out for the best.

In college, I was student government president.  However, I don’t like politics.  You might be asking yourself if this is the lie but it isn’t.  I actually was student government at the college where I got my associate’s degree.  I was a natural born leader but the stress of the job didn’t work for me so a year later, I didn’t run again.  I promoted someone’s campaign and I actually felt bad for that person.  Politics wasn’t for me and to this day, I don’t really pay attention to it. The only time I do is when it is time to vote in a presidential election and even then, I usually wait until the end to get to know the two final runners. I don’t even like reality TV where voting is involved (i.e. American Idol).

Growing up, I was a girly girl so raising boys has been a complete shock to me. You probably are wondering about this one but the truth is, I was never a girly girl. When I didn’t have my nose in a book, I was busy playing in dirt, climbing trees, and getting into trouble that really embarrassed my parents.  They expected me to be a girly girl which I wasn’t.  However, that has turned out pretty well for me since I am raising boys.  As a mother to boys, nothing grosses me and if not, for the chronic pain, I am very active when it comes to boy’s sports.  Whatever my boys are into, I am into such the WWE, wrestling, hockey, and other boy stuff – you name it.  However, the farting still maddens me.

Cancer came into my life twice and it has forever changed me.  Many of us know this one to be true. Four years ago, my younger sister was diagnosed with Hodgkin’s disease. Hodgkin’s is a type of lymphoma and lymphoma is a cancer of the lymph tissues in the lymph nodes, spleen, liver, and bone marrow.  My sister was lucky because she was diagnosed pretty early. She is nearly four years in remission and even though she was told she was not able to have any more children, she is due in January with a daughter.  God works in mysterious ways.  As many of you also know, I lost my brother to peritoneal mesothelioma on December 20, 2010.  My brother was only 31 years old and when he was diagnosed, the disease was so far advanced that the chances of his survival were small.  As we got close to his last days, we knew that were losing him and we decided that if we going to lose him we wanted him to go knowing how loved he was. 

Both these experiences have changed me they have shown me sadness and happiness. Everyday my sister stays in remission and for every victory she has, I am so grateful.  I am also grateful for having had an opportunity to have said goodbye to my brother.  So often, people are taken away from us without warning and while my brother’s last two months on this earth were the hardest of my life, I am grateful for the opportunity to say goodbye and to show him how loved he was.  Cancer changes you in more ways than you thought possible.  Whether you are a survivor, a caregiver, or someone who has lost a loved one to cancer, you are forever changed.  The only thing I want is the strength to be a health and legal activist fighting for a cure and pushing for legislation banning asbestos and protecting the rights of those who are affected by asbestos cancers. I am not strong enough today but I will be someday and when I am, I will fight in my brother’s memory.

This post was written as part of NHBPM – 30 health posts 30 days: http://bit.ly/vU0g9J

NHBPM Day 7: The Rollercoaster: Case of the Mondays


Today’s NHBPM asks: Case of the Mondays. Write about something that gets you down, burns you out, or makes you sad. Purge it in a blog post. Turn it around at the end. Tell Tuesday why you’re ready for it.

The past few days, I have dealt with a flare up and I have had a lot to think about as far as how long it has taken me to actually understand or describe what it is like having rheumatoid arthritis.  For most of us with RA, the outside world cannot even begin to understand or grasp what it is like living with RA.  Having RA has forced me to focus on the good days and lay little emphasis on the bad ones.  The bad days are the ones that are relevant to this NHBPM prompt. The bad days with RA are the ones that burn me out and make me sad because RA takes a toll on me physically and emotionally.

Case of Monday

So, it is Monday and a bad day is a flare-up day.  For me to simply tell others some days are good and some aren’t doesn’t even begin to define the pain, fatigue and the general “just feeling sick” aspects of RA.  I have learned that there is pattern that my flare-ups follow. It starts out emotionally and then moves on to the fatigue and pain.  It is important to note that not everyone has the same pattern but I believe that every patient has an understanding of how their flare-ups evolve.

My perception of the flare-up is rollercoaster of pain, fatigue and not feeling well.  When I first started having symptoms, I would get this feeling like something wasn’t right. Exercise and physical activity became a major task because my muscles were starting to feel tense and tight. Even though my joints and muscles were aching, I still had more good days than bad ones. After that I started to feel, lethargic and sleepy all the times. These smaller flares would last for days, were low in severity, and were not enough to prompt my doctors to suggest anything more than stress. As the disease progressed, I started to feel irregular twinges, sometimes stabbing like pains that were over as quick as they came.  I started to feel consciously aware that I was not feeling well and aching all over.

At some point, I began to have a better understanding of what I was feeling and was able to describe it clearly to my doctor – fatigue, pain, malaise, swollen joints, and low grade fevers and chills.  By the time I was able to describe how I was feeling, the disease had reached new realms.  With this progression of the disease, I was able to better define the spheres of pain I endured, acute aches, burning pain, stabbing pains and sometimes, piercing pain.  Sleep became difficult, my weight was fluctuating (up and down), and there were periods where my vision was blurred. Concentration because difficult and the brain fog was debilitating.  All of these symptoms were consistent with a flare-up and these are the symptoms of my bad days with RA.

An RA flare-up is what sufferers refer to as a bad day.  Your bad days are the days when your body is rebelling against you and feels like it is under attack.  The irony is that when you get used to this feeling, the pain starts to slowly subside, your joints start to move more evenly, and the swelling decreases. This is the RA rollercoaster that so many RA patients describe.

Tuesday is here

The flare-up is Monday and we are making room for Tuesday.  The flare-up has finally passed and you get the compulsive need to get things done. You go back to sleeping better and you start to feel more rested. Your emotions are now in check and you are able to feel positive.  Even during a flare-up, I remind myself that everything is possible.  When I first diagnosed, I found myself wondering whether RA kept me from being a good parent.  What I have learned that even it feels like RA is winning, I know that my children look to me to set an example for them.  I want them to see that success is possible despite the setbacks.  There are days when I feel emotionally and physically drained but all I have to do is look at my boys and see how independent, strong and empathic they are despite RA in all of our lives.  I remind myself that they get that from watching me. While my kids think they need me, they don’t realize that I need them too. It just takes a smile, a giggle or that look that they are so glad to see me after a long day for me to be reminded how blessed I am. 

This post was written as part of NHBPM – 30 health posts 30 days:  http://bit.ly/vU0g9J   

NHBPM Day 6: If I could anything as a health activist: I would fight against asbestos


Today’s prompt asks the following: Get inspirational. Money is no longer an issue. What is your biggest goal that is now possible? How could you get there? Now bring it back down to size. How much of this can you accomplish now, in a year, in five years?

 I advocate for arthritis and fibromyalgia.  Both causes are important to me because I live with both diseases.  However, if I good do anything as a health activist, it actually wouldn’t be for fibromyalgia and/or arthritis.  If money wasn’t an object and I could do anything as a health activist, I would fight for legislation that takes strict action on asbestos use and exposure.

In this fight for asbestos legislation, I would have three goals in mind.  First, I would push to develop a better system that compensates those injured and to protect their rights and the rights of their families. Second, I would promote legislation to ban asbestos use all together, and third, I would work to harshly prosecute those who knowingly expose people to asbestos.  This is personal because I lost my 31 year old brother to peritoneal mesothelioma and it hasn’t even been a year.  My brother never worked in an asbestos related industry so how he was exposed is a mystery.  However, if not that exposure and someone else’s disregard for life, my brother would be here today.

The federal government has policies to promote safety related to asbestos but the U.S. hasn’t taken a universal ban on asbestos.  There are 55 countries around the globe that have banned the use of asbestos.  Federal legislation would not only ensure that asbestos claimants would be properly compensated for sickness, loss of life, and loss of wages but also would work to prosecute company heads who knowingly make decisions that expose people to asbestos. For me, monetary compensation does not bring back those lives lost.  As for compensation for victims and their families, it would be similar to the Black Lung Benefits Act that created a benefits program for U.S. coal miners. Such a law would benefit persons who have become sick from asbestos exposure and entitle them to legal protections.  What most people don’t know is that cancers related to asbestos exposure are the most painful cancers out there and for me, this is something that makes me very angry. I watched my brother suffer in the most horrible way and it was the first time I felt true anger.  No one deserves what my brother went through, what others have gone through, and what will happen to more people if we don’t do something.

There have been some legislation considered but none have become law.  Current asbestos legislation to date doesn’t guarantee compensation to all sufferers.  The inability to pass such laws is a result of tampering with proposed legislation to protect asbestos corporations.  We cannot protect hardworking people if allow powerful lobbying that works for those with the deep pockets.  If I had the financial ability to pass legislation, I would put an end to this kind of lobbyism because right now, the asbestos industry doesn’t have to worry about stronger laws to protect victims and criminal penalties to prosecute those responsible. If I could, I would put an end to this. Further, legislation could promote a ban as has been mentioned by the EPA and the Consumer Product Safety Commission but unfortunately, these have also failed because of lobbyism has favored corporations.  

As for a timeline, in the first year I would push for legislation that protects victims and their families by providing medical care and compensation in addition to funds for research towards better treatment methods, methods that prolong life and hopefully lead to higher rates of remission and a  cure to asbestos cancers.  Three years after, I would like to see an EPA ban passed on asbestos use and passage of legislation that minimizes the strength of lobbyists who fight to bring down laws that protect people from asbestos exposure. By the fifth year, I would like to see companies that knowingly expose people to asbestos punished under criminal negligence statutes. 

For more, this is an issue that hurts because I had to choose between watching my brother suffer and letting him die.  There was a point where my family had to make a decision to end care because nothing was working.  He was in pain and he was suffering and nothing we did could change that.  If not for the negligence of someone else, there is a good chance my brother could be here. I have fought many demons on this one but I can’t and don’t have the strength to play a role as health activist for mesothelioma sufferers and their families or even a political or legal activist role to fight for laws that promote litigation against asbestos.  Someday, I will be strong and that is when I will fight in my brother’s memory and when I do, I will fight to the best of my ability.  I won’t stop fighting until my goals are met.

What about you? If you can do anything as an activist, what would it be? 

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

NHBPM Day 5: Five ways I have changed since I started advocating


 

Today’s NHBPM: 5 things that changed my life. For better? For worse? List 5 things that changed your life as a patient, caregiver, or Health Activist and how.

There are been so many things that I have changed my life since RA and Fibromyalgia came into my life. However, I am going to talk about the five ways I have changed since I started advocating.  I have always had a knack for helping people and that is why I went in the legal field in the first place.  In the beginning, I advocated because it helped me. Later on, I advocated because it helped others. After that, it was because I was good at it and then, my brother got sick, I did it because I had to.  Now, I do it in memory of my brother.  All these five reasons have changed my life and that has changed how I think and how I feel.

  1. I advocated for myself.  When RA and fibromyalgia first came into my life, I never felt more alone in my life.  In the beginning when Alliance Health approached me to be a patient advocate at Arthritis Connect, I did it because I needed to feel useful.  RA and fibromyalgia took so much from me including the ability to feel accomplished.  For the first time in a long time, I felt like I was accomplishing something and chronic pain wasn’t holding me back. While I was helping others to advocate for themselves, I was also learning to advocate for myself.  Learning to advocate for myself was the most important lesson that came from all this.
  2. I advocated for others.  In the legal field, I helped others but in the beginning, the only people I was helping were those who had the deep pockets.  I worked in insurance defense and even though I thought I had found my calling, I really hadn’t.  I was helping people who didn’t need helping and until I started advocating for both arthritis and fibromyalgia, I don’t feel truly proud myself.  For once, I really felt like I was helping people who really needed helping and I felt it.  It was a really good feeling.
  3. I was good at advocating.  Every day, I found myself an expert on topics I never understand prior to RA, fibromyalgia and my advocacy work. I knew names of arthritis diseases that people have never heard of and I could spell the names of medications that most people couldn’t spell.  I learned to decipher factual information from fiction and I found out I had a knack for understanding and retaining this kind of information.  For once, my knowledge wasn’t just centered on the legal field.  My advocacy work had educated me through choice and without any assistance.
  4. I did what I had to do.  My brother fell ill last year about this time.  I had at this point been advocating for nearly a year. I found myself fighting for my brother like I was fighting for my own life.  I fought with insurance companies, hospital directors, nurses and doctors.  I fought for him to have the best possible care. I thought that my hard work would pay off but a month and a half after my brother entered the hospital, we lost him. In the beginning, I felt like I had failed.  It took me awhile to find my way out of that mindset.  Cancer took my brother but I did not fail him.  I was there for him when he felt so alone.  I stood up for him when he couldn’t stand up for himself.  I was his voice when he didn’t have one. For the first time in my life, I felt like I had triumphed in a way that made him proud to have me as an older sister.
  5. I advocate in my brother’s memory.  For a long time, I told myself I advocated so that I would have a sense of purpose.  Later, I told myself that I advocated to help others.  I thought that I was doing it for something noble or something prestigious and maybe I felt that in the beginning.  Now, I advocate in my brother’s memory.  He saw me fight for him every day from the moment he entered the hospital to the day we lost him.  He relied on me to be his strength as his strength ran out and I made a choice from day one not to fail him.  I am still his strength and I advocate to continue to be that strength.

Advocacy and chronic illness have changed my perspective.  I no longer see success as how much money I make or what my professional title is.  I see success in faces, voices, and emails from those I have been able to reach out to.   I have definitely changed from someone who just wanted to climb the career ladder.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

NHBPM Day #4 After I Hit Publish


Today’s NHBPM prompt asks: What happens after you press “publish.” Write about your post-blog-writing process. Do you immediately tweet a link? Email it to everyone? Re-read it for spelling errors?

I once read that serious bloggers don’t stop after hitting the publish button.  Creating good content is the only first part.   It is getting the message out that really matters.  Of course, I don’t always run to Facebook and I don’t really use twitter that much anymore but it is nice to get the message out.  For the most part, I have a great group of people who like to read my posts and they are able to since they automatically get an update via Facebook or via email as subscribers, or have another follow option.  

When I do reviews, I don’t spend a lot of time getting the message out.  I usually just send out a message to those I know that are interested and go from there.  I have loyal followers and I like it that way.  It is my way of saying thank you to them by not employing all the “get the word out” options.

For me, my readers’ feedback is most important and I try to respond to every comment.  I am not always able to as life can get pretty busy for me.  If for some reason I don’t respond to a comment of yours one day, it is not because I am not acknowledging the value of it but because I am overwhelmed or just busy.  My life has a tendency to be like that.  Your feedback is the reason I write and if I didn’t get any feedback, I would just be talking to myself.

Of course, I review the content several times after I have posted it because, unfortunately, I think faster than I type so there are errors after I hit publish and sometimes, I don’t bother checking.  I check for spelling and grammatical errors and spacing and formatting errors but I still manage to miss them because, well, I am human.  I generally don’t tweet about my posts but I do have them linked to Facebook and once in a while if I am really interested in feedback, I will repost on Facebook.

I am not here to make a profit.  I am here to write about chronic illness and how it affects my life.  I think that when people are first diagnosed, they see their illness as something that has just taken over their life. While that is true on some level, it is not entirely true.  Chronic illness may be a part of your life and it might complicate it sometimes but you always have some degree of control.  The choices you make, how you decide to respond and fight back keeps you control.  

When I started blogging, I did it because it was the thing to do. I started blogging when I pregnant with my now three year old. RA had not yet come into my life. In fact, I had it all and I really had nothing to blog about.  My marriage was good, I have a new baby on the way, my career was thriving and I had bigger plans, and life was going according to my plans.  In those days, I blogged about the humor that constantly was a part of my life whether it was about my son, my pregnancy, my siblings, my job, and my life.  I was happier than I had been in a long time.  After chronic illness came into my life, things changed and I want to blame chronic illness but that wasn’t all the case.

My life seemed to change overnight.  My blog went from expressing my thoughts and opinions to a place to vent my frustrations about my health and the issues that life was throwing at me.  Chronic illness turned me into a person I barely recognized.  My moods were angry and sad as I struggled with a new life of illness and pain and all this with a new baby and having to return to work because of a bad financial situation.   I remember crying every day for a good sixth month period.  I was falling into depression, waiting for some horrible fate, and I felt more alone than I had ever felt in my life.  I put on a brave face in front of family and friends, and especially my kids.  The woman I was before RA and fibromyalgia was strong and always on top of her game but the person I had become was a blubbering mess.

I am not sure when it happened but sometime after the spring of 2009, about nine months after my diagnosis, I looked in the mirror and I realized that I did not know who I was.  I had started communicating with other bloggers about their experiences and it occurred to me that my fears were nothing more than fears. Chronic illness would only disable me and end of my life if I let it and that was the road I was heading.  I also thought about my kids and what my choices were doing to them and what they would to them in the long term. I was failing them and not giving them the mother that they deserved.  I knew that they deserved better and I vowed to give them better.  I tell myself everyday that RA and fibro will only win if I let them and I have to set a better example for my children.

So, I blog to remind myself of that promise.  I blog to allow to see what took me nine months to see.  Your life is only over because of chronic illness if you let that happen. Every time I hit publish, I wonder whether I am sending out the right message even when I vent.  I think it is important that other patients see the human side of chronic illness. We are not always go getters and we are not always strong.  We often keep going because we have to.  

I went from enjoying my life to complaining about it. It took a wakeup call to write from my heart. If not for my blog, however, I would have not seen what was happening to me.  I am glad to connect with others who understand my struggles and are willing to share the best of their selves, their victories and their struggles.  I am proud that I can make a difference in the lives of others who are struggling with the things that I have struggled with. I am glad that they see me as strong even I don’t see myself as such. It is my wake-up that I am making the same mistakes that nearly put me into severe depression nearly three years ago.  My blogging also benefits me because it keeps me knowledgeable and active about chronic illness and sometimes, I feel like I can be an expert on topics that I once knew nothing about and that in turn makes me feel important and I don’t know about the rest of you but when chronic illness limits you, important is as good as it gets. 

What about you? What happens when you hit publish? Also, why do you blog? Leave those interesting and creative responses below.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J  

NHBPM Day 3: Dear 18 year old me


 

Today’s blogging topic involves writing a letter to yourself when you were 18.  If you are going to do this, be sure to tell yourself what to do more of, what to do less of, and what you have to look forward to in the next few (or several) year.

Dear 18 year old me:

Congrats on finishing up high school.  It is big deal and probably the last time that you can in a me-me zone.  By the time you are twenty-five, you will have four kids and by 32, you will have five.

There will be obstacles along the way but in the end, you won’t have any regrets so it is okay to take chances.  For the next year, however, it is okay to waste time doing nothing but having fun.  You will never have that opportunity again, and it is only a year so enjoy it. Life will come at you soon enough so enjoy every minute of it.

Spend more time with your parents and don’t be angry at them for everything.  Dad maybe tough on you but he means well. There will be a time when you really wish he was around.  Mom is strict but one day she will be one of your best friends. You will look up to her because you realize that you are more like her than you ever imagined and you will be very proud of that. Your mom will always be your biggest fan so remember that when you are young and still hating her.

Even later when chronic illness comes into your life, you will learn to make sweet lemonade with pretty sour lemons.  But before that time, try new things. Don’t get stuck in being so serious all the time because there will be a day one life throws some big responsibilities at you. Also, know that you will make mistakes and the people that you thought you could rely may not be as reliable as you expected them to be but don’t be disappointed.  Regardless of the situation, they came in your life for a reason. Learn from the heartache and move on. 

Spend more time with your siblings because you never know what pain life can bring.  One day you will wake up and you realize that your sisters are your best friends but don’t forget about your brothers.  Make sure that you keep in contact with them even when they are angry at you.  Again, you never know what life will bring, and even when there is heartache, you will know how to handle it. 

When you remarry, understand that sometimes people go into marriage thinking they won’t make the same mistakes again.  That is not necessarily true. Mistakes are things that we hope to learn from and sometimes, we have to make them more than once to get things right.  Also, know that money is the biggest reason marriages fail. However, it is okay provided you understand where you failed and you work to overcome and fix that.

Know this. Despite everything, you will learn that you are smarter than you think, braver than you know and stronger than you ever thought possible.  Life will test you and you will rise to every challenge. 

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

 

NHBPM –Day 2: My TV Show


Today’s NHBPM post involves my blog being turned into a TV show. I am the co-writer on the writing team.   You won’t believe this but I would like Ricki Lake to play me because she is so down to earth compared to other celebrities. I like her because she always manages to triumph despite the obstacles that life has thrown her way.

As for the TV show, it would start out with my childhood and show that even from childhood I was always tough and determined.  It will depict how my health issues started a kid and how long it took to get answers.  Also, it will touch on the some of the personal setbacks I have had that may have set me back but I still found a way to overcome.  Then, there would be my current health issues and how RA and fibromyalgia changed my life.

I am not saying that my blog or my life is interesting but I am glad that I reach so many people. For me, it has always been about reaching just one person so that they could seek answers. I enjoy advocating for arthritis and fibromyalgia but the one thing that I struggle with everyday is wishing that I was strong enough to advocate and fight for people with peritoneal mesothelioma.  For me, even a reminder that peritoneal mesothelioma came into our lives is hardest thing to bear. I used to think to think that I had already been through the worst, but my brother’s illness and death surpass anything to date.

I want to his memory to stay alive because I don’t want to forget that he was here and what an important part of my life he was.  I fought so hard for him but in the end, the cancer won.  I know that what happened was out of my hands but I wish that he had more time with us.  Two months after he fell ill, we lost him.  It still doesn’t make a lot of sense. So, I would want my movie to focus, at least in part, to what I wish would have happened. I am not saying that it would change anything but remember in the final episode of the Roseanne show, it would be like that.

In the season’s final episode, Roseanne reveals that the show is actually written by Roseanne Conner about her life.  She wrote a book after Dan’s heart attack which we find out turned out to be fatal.   It is her way of coping. In reality, Dan had died, the family did not win the lottery, her sister is a lesbian and her mom straight, and Becky and David are together and Mark and Darlene, rather than the opposite.

I know that wishing or wondering doesn’t change anything but I am sure that we have all wondered “what if” something different had happened.  What-ifs kept us sane.

What about you? If someone made a TV show about your life or blog, what would it be about?

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J