A New Year, Get Active!

It’s the start of another year, and most people are working on the traditional New Year’s Resolutions: eat healthier, go back to college, change career, lose weight, work out more … you know, the usual resolutions! But those of us with pulmonary hypertension don’t always have the same priorities as others. One of our top priorities is to remain active, even though, the simplest task can be difficult. But there is a way to get active this year that’s a little different from the norm. You can start your new year by becoming involved in the community that surrounds you.

There are many different ways to get active in the community. Why not start with your local PH support group? You can co-lead a support group, help with getting sponsorships for meetings, make telephone calls to other members or local PH doctors, help with topic ideas, get speakers for your support, help with a PH awareness event or fundraiser, and much more. And if there isn’t a local support then create your own support group. PHA can help you get started on creating a support group, spreading the word to other PH patients in your area, and help you maintain your support group. For more details visit PHA.

I started my support group in November, 2008 because it was over two hours to a support group, and I had a chance to give back to the PH community and stay hopeful. PHA helped me to get started with topic ideas, leaders training webinars and information to maintain my group. Through my support group, we have had PH awareness events from participating in a parade to setting up informational tables. It has been a wonderful experience that keeps growing and growing.

If you want to try something different outside the PH realm,there are always not-for-profit agencies. Most non-profit agencies survive on the help of their community volunteers. Generation Hopers can make a difference in the lives of the people in their community or to a special cause. You can work with the homeless population in the soup kitchens serving or cooking meals or volunteer in your local hospital and nursing homes. Sometimes sitting with other patients in the hospital or reading to the elderly for a few hours a week can be really fulfilling. You can even volunteer at your local library, domestic violence shelter, youth shelters, and so many other places. If you need help, contact your local United Way agency for more volunteer sites.

I recently joined a board of a non-profit agency’s new youth program in the local high school, and I have impact on the curriculum development, community events, advertising of event, fundraising ideas and much more. I’m so excited to get more involved in this great new program this year.

Where I dedicate most of my time and energy is at my church. I do this because it gives me the most spiritual and emotional fulfillment, and gives my life purpose and meaning. I joined my church’s Website Ministry and Youth Ministry. I love the Website Ministry because I do most of the work from my home computer and I use the least amount of energy. I’m able to serve God by sharing information with others without ever leaving my home especially on not so good days. But I wanted to do more and I wanted to serve God deeper, so I joined the Youth Ministry. Working with the Youth Ministry allows me to minister to the youth of my church in different ways. I can be a resource to the local youth and help with coordinating youth program, events and activities. I find it challenging, but I love to learn more of how I can help the youth today and serve the Lord.

Life is more than your PH diagnosis, so don’t let your illness stop you from anything. Get active this New Year! Look at what you would like to do and your strengths, and then match it to what surrounds you in your community. You can make a difference. Getting involved and volunteering in your community keeps you active, gives your life purpose and meaning, and empowers you with hope.

What is the Generation Hope blog?

A blog can be many things … a diary, a rant, a means of promotion. It can be the voice that lets you know you are not alone. It can provide a chronicle of experiences that mirror your own. It can inspire...

The Generation Hope blog seeks to bring a voice to young adults facing Pulmonary Hypertension. It addresses those issues most applicable to people in their twenties, thirties and forties such as college, work, children and dating; all accompanied by a chronic illness.

Our blog is written by patients who are going through these experiences or who have gone through them in the past. They come from across the country and around the world! Each offers positive viewpoints on the realities of life with PH.

A blog should also be a conversation between its bloggers and readers and we want to open up a dialogue with the community. Check out some of our past posts:

Finding Your Voice

We Are Hope

Who would I be without illness?

As we prepare for the coming year, we would like to invite you to join our blogging team. Why not write one post (or more) in the coming year! If writing isn’t your thing, is there anything you would like to see addressed on the blog? Any issues or problems that you feel could be tackled? If so, we want to hear from you. Simply email: ChandaC@phassociation.org

As new posts arrive why not share your own experiences on what you’ve read? Doing so will ensure that other patients who read it will gain a well-rounded view on the topic. Use the comment box below to share your thoughts.

With regular new material and an engaged and active readership we can continue to inspire each other to live our lives with enthusiasm and optimism … and that’s what Generation Hope is all about.

Apply for a 2012 Lantos Award!

Colleen Brunetti, a PHA Generation Hope member and blogger, received a 2011 Lantos Award to produce this video, which explains the purpose and value of PHA’s email groups (like Generation Hope!).

Do you have your own creative idea and just need some funding to make it happen? PHA is now accepting applications for the 2012 Lantos Awards! Apply today and PHA may award you up to $5,000 to build your PH awareness project or enhance services for PH patients. Visit www.PHAssociation.org/LantosAwards for more details!

PH, Professionalism, and the Digital Age

Leading a professional development presentation.

Photo Credit: Amharc Photography

The Back Story

When I was first diagnosed with Pulmonary Hypertension I was teaching part-time in a public school. I was met with a lot of sympathy, and promises of support from the school community. Within months, however, my teaching assignment for the following year was changed to a situation where my hours were cut, my commute extended, and a student was placed on my case load who required both physical restraints for violence and chasing because he tended to bolt. By the time I was diagnosed I wasn’t even climbing a set of stairs well, so this was of course out of the question. When I tried to have my assignment adjusted so that I was actually teaching and not chasing, I was shown the door… or I quit… or I was kind of fired… whatever you call it, I was out of a job and the correlation between my diagnosis and the change in job assignment was just too convenient to ignore.

Could I have sued? Yes, probably. But I was immersed in this totally terrifying world of being a newly diagnosed Pulmonary Hypertension patient. Like so many others, I didn’t know if I was going to live more than a few years. I simply did not have the energy or internal strength to take on another fight.

Turning point

I moved on from that job and began teaching online college classes, something I still do today. A little over a year ago I also started my own company teaching sign language to kids, caregivers, and educators.

Both jobs are independent contractor based. I have to consistently earn the right to do the work based on job performance. There is no guarantee of work, and no net to catch me if it goes badly. But it is work, and work I enjoy.

Because of my experience with the public schools, I have guarded the secret of my Pulmonary Hypertension almost fiercely from anyone I have contact with on a professional level. However, in my private life I am involved literally daily in advocacy and awareness raising, to the point where my activities have become public knowledge and widely chronicled online in my blog, Facebook, newspapers, radio interviews, and through work with PHA.  In short, if you Google my name, it’s connected with PH.

This has presented a huge professional dilemma.  I have worried constantly that word would get out and I would again find myself without employment because someone jumped to some conclusion about what PH means in my life, as far as ability to meet professional expectations.

Two semesters ago, this worry started to materialize. A college student (whose social boundaries I can’t help but question) did indeed do a Google search on me. Then he wrote me about what he found in regards to PH. It’s safe to say he did not understand what he was reading, but suffice to say, I was shaken.

I talked to a lot of my friends in Generation Hope about these concerns – should I just come forward and tell my employers? Their advice was good. In short, it was better to come forward and be in charge of what information got out, and how it got out, than to be blindsided by information someone found online and misconstrued.

Still, I dragged my feet for a while. I was comfortable just doing my job and being trusted as a professional based on the merit of my work. I did not relish the idea of having these good relationships tainted by something like PH, and had little reason to trust things would go well, since they had gone so badly in the past.

But finally, I got sick of it all. I got sick of worrying and hiding and screening friend requests on Facebook from people I actually wanted to be friends with, but also had professional relationships with. PH is such a big part of my life; I didn’t want to hide it anymore.

I started with the sign language company I do some independent work for. I called my national director, took a deep breath, and told her the story. She’s a wonderful lady, and her response was warm and supportive. Since that call, I’ve been hired to do even more work for them, and a pretty big project at that, so I feel it is safe to say things are going to turn out okay there.

The college was harder. It’s a more high-pressure job, it’s most of my income, and if I lose it, my family and I are going to be in a very difficult financial situation. Finally though, I just had enough of the hiding and tiptoeing around, not to mention I had my parents (who also work for the college) under gag order not to talk about my PH, and that was difficult for them as they couldn’t do any awareness work of their own with most of their community because of it.

I sat down and wrote a long letter to my supervisors at the college. I told them my story, and why I had hid it for so long. I emphasized that I remain, as always dedicated to my students. The response again has been supportive, as has follow-up communication.

Today

I’m slowly relaxing and getting comfortable with the word being out there, trusting that when the hiring season next comes around, my evaluations and work ethic will be what they look to once again.

Conventional wisdom says you should keep your professional and personal life separate, and to a point, I agree. Certainly I’ve seen the dark side to why that is. However, in the digital age this is becoming more and more difficult. There is something to be said for being in control of the situation and managing how and what gets out about your medical condition.

There’s not much you can do about how PH is going to affect your life sometimes. But there’s a lot you can do about how you react to and handle it, and how you use those times to educate others. The professional arena is just one more place to make those considerations…and sometimes a leap of faith.

The importance of PHriendships

When you deal with the onset of a chronic illness you are
forced to confront your relationship with yourself: your expectations of your future and work/life balance. For me pulmonary hypertension revealed greater meaning in my connections with others too. I realized just how lucky I was to have great friends who stuck by me through my new set of circumstances. I also truly valued those new relationships I formed, many of which were born out of a common experience of ill health, or indeed pulmonary hypertension itself.

Like many patients, I initially struggled to comprehend my diagnosis. Friends knew I was very ill but also couldn’t quite grasp the seriousness of what it entailed. Part of this was due to the fact that we were all in our twenties. We were not equipped to deal with serious ill health at that point as, for the main part, we had not been exposed to it.

But my friends and I gained understanding as time went on. For me, a good friend was someone who understood when I was tired and who knew that I might need to change my plans at the last minute. There was Anna, who knew that though I could dance in my seat at a Madonna concert, but couldn’t walk the steep hill from the concert venue! There was Tom who flew to San Diego to be there for my PTE surgery and who gave me a place to crash whenever life at home became too much.

I also developed relationships with other people with PH. One of those was a mother (also called Sylvia) from Northern Ireland who I’ve never met in person but versed me on everything I could possibly need to know for life before and after PTE surgery. We still check in on each other using that shorthand only used by those people who have been through such similar life-altering events. At PHA’s last conference I was telling my story to others at a support group meeting when another patient jumped up and exclaimed, “Oh my God, you are Sylvia, the Irish girl!”
That was Amanda and it turned out she had her operation a week after mine and had heard encouraging tales of how well I had responded to surgery. From that point on we became firm friends and I even visited her in her hometown of St Louis this year. (see photo)

And there are so many others I’ve met online and in person, people who I would never have known were it not for our connection to PH. They are always ready to share encouraging words or offer advice.

My old friends remind me of who I was before my illness while my new friends give me inspiration for who I can be after serious ill-health. Both are equally important and I couldn’t imagine the last few years without them.

How have your friendships developed and changed since your diagnosis?

Drawing the line . . . how much to tell

Who have you told about your illness? How much do you generally tell people and when do you tell them? When young adults are faced with a disease such as pulmonary hypertension they have to negotiate these issues
whenever they deal with their employers, universities, co-workers, new friends
and even dates.

Before my PTE surgery I often got very stressed at the thought of telling people about my illness. I never quite got the hang of knowing when to tell or what to tell. I didn’t develop the thick skin necessary to combat the sometimes negative or naïve comments an explanation sometimes drew. My worst experience of dealing with an employer was when a supervisor asked what type of illness I had. I told him a lot about pulmonary hypertension and even handed him a PHA brochure. His response? “So, really, there is nothing wrong with you.”

What I didn’t understand at the time is that the key to this, just as divulging any personal issue, is drawing boundaries. It does not have to be an all or nothing scenario. I’ve learned that I can tell my boss just enough to allow for any flexibility I might need without feeling like I am crossing
the employee/employer line.

I’ve noticed that generally friends and co-workers are sometimes uncertain about how much to ask or, reversely, ask too much. So you learn to draw the line yourself. I now only reveal the information with which I feel comfortable. On the other hand, dropping some casual comments into the conversation will also let people know that it’s ok to talk about the elephant (or O2 machine) in the room.

Dating is another minefield when it comes to revealing information. You might have a stock statement you use in scenarios such as this, one that offers an explanation without being overwhelming. Even as someone who is comparatively healthy, I am still cautious about revealing my history and the effect PH had on my health in recent years. I’ve learned to go
with my own instincts. If I don’t feel I can trust someone I hold back until I get to know them better. Recently, I chose not to immediately reveal my last name to someone for fear they might google me and find my connection to PH before I was ready to tell. Instead, I slowly disclosed over time the impact the disease had, and continues to have, on my life.

For me, putting these boundaries in place, gives me a sense of control. It allows me to write my own narrative on what is, at the end of the day, my story. This is what works for me.

How do you deal with this? Where do you draw the line?

Relating to Illness on Screen

I recently saw the new movie, 50/50, in which the main character, Adam, a 20-something professional, is diagnosed with a rare form of cancer. The film deals with his health struggles and their impact on his life. Where this movie differs, in my eyes, to almost any other film dealing with illness, is that it doesn’t martyr the characters or overdramatize key moments such as diagnosis, surgery or recovery. Instead, it realistically and sensitively (for the most part!) deals with the large and minor ways serious illness affects everyday life.

Whereas many films that deal with these issues place the disease as the patient’s central focus, most pulmonary hypertension patients realize that life does not stop just because a serious condition enters our lives. Instead we still have to maintain our relationships, negotiate work or college and keep up some form of normal routine.

For me, the hospital scenes were particularly reminiscent of my own experiences. Diagnosis is not always the “time standing still” doom-laden moment typically depicted on screen. Often it is a phrase casually thrown out by a doctor and only registers with time and research on the topic. Just as Adam did, I once found myself googling the unfamiliar terms I’d encountered, terrified of what I found. Likewise, the emotion surrounding major surgery is typically overshadowed in reality by the practicalities of pre-surgery prep or, for family members, the hours of waiting for results.

One of the more prevalent clichés that I’ve seen in “disease” movies are the secondary characters who either unconditionally support their ill friend or family member, or show their true colors and flee at the challenge of handling such a serious situation.

Real life, for the main part, is a far more complex affair. Friends and family sometimes disappoint or may feel, at periods, overwhelmed. They remain human, not superhuman. 50/50 successfully depicts people who don’t necessarily transform due to a serious diagnosis but do adapt. The immaturity of Adam’s best friend, Kyle does not stop because Adam is sick but, in some of the movie’s most moving scenes, we see his willingness to support his condition.

Likewise, PH does not transform patients into saints! If we are lucky we use the disease as an opportunity to better ourselves and our lives. But, just like Adam, who fails to see the impact of his disease on his family, we can struggle, at times, to see beyond our own difficulties.

But, for me, the most relatable and refreshing aspect of the film is its willingness to allow humor into every situation, no matter how dark. Kyle teases Adam about his bald head or scar just as my brother teased me about my blue-ish nails or entertained me with stories in the cardiac ward. Just like the film, illness can be inspiring and moving, but also funny!

Are there any movies that remind you of your own struggles with PH?