Thanks and Goodbye, for Now

Thanks and Goodbye, for Now

In Life with PH

As you may have gathered from the title, this column will probably be my last one — although never say never. I’ve really enjoyed my time with Pulmonary Hypertension News, and am sad to leave such a wonderful team. This opportunity helped me discover how much I enjoy writing, and also to gain more experience, for which I am grateful. It was also great to be able to share my voice, and connect with so many other people who understand what living with pulmonary hypertension can mean.

I feel as if I need a change in my life. I need time to focus on my health, although less on pulmonary hypertension. Something I didn’t expect when starting a column were the personal comments and emails I have received from readers. For the most part, the majority of the feedback was encouraging. I want to thank everyone who took the time to read my column and, more importantly, felt comfortable enough to share their own story with me. It means a lot that I was able to connect with so many people, and that I could add one more voice to our community. Thank you to everyone who has supported me in this endeavor.

I’ve always been a private person. When I was first diagnosed, I didn’t tell anyone, other than my boyfriend and two best friends for several months. I also begged my parents not to tell anyone in our family. I’ve struggled with being open about what I am going through, along with finding ways to respond to all of the emails that I’ve received from frustrated people wanting help and answers. I understand those fears and frustrations because I have them, too. It has been overwhelming for me, and stressful, which I know is not good for overall health and well-being.

Unfortunately, I received quite a few anxiety-inducing responses from people. Like a comment to the effect that it sounded like I didn’t have pulmonary hypertension, after I wrote about not being able to vacuum anymore. I didn’t expect comments like that from people who know how difficult it is to downplay the severity of an illness. I also received emails from people telling me that they knew someone who had died from pulmonary hypertension, and others who asked when I was getting a transplant. These were tough to read, especially after spending several hours in an emergency room. Stress is not good for me, and I feel its physical and emotional weight. Stresses make some of my symptoms worse, and they often keep me awake at night.

So, it is time for me to focus on my health, privately. I also need to focus on my happiness, which is something we all need to find ways to hold on to.

This will be my last column, at least for now. I will continue writing because I’ve learned that I love it, but I want to write about things beyond my diagnosis.

Going forward, I want to share something I saw on a poster in a classroom where I was assisting in teaching.

Before you speak: THINK

T= Is it True?
H= Is it Helpful?
I= Is it Inspiring?
N= Is it Necessary?
K= Is it Kind?

I am sharing this to remind you that, although you have a lot of fears and frustrations, so does a columnist who is writing about living with pulmonary hypertension. It is important to remember that there is a real human being on the other side of the computer screen.

Any aspiring writer welcomes feedback, so do not hesitate to let a columnist know if you enjoyed their column or not. If you would like to read about a certain theme or topic, let them know. We often have a hard time knowing what people want to read and, more importantly, what readers find helpful.

I’ve always been open to criticism. As someone who went to art school, I am used to having people tell me in a public forum that something sucks. I once had an art critic tell me I was brave for majoring in art because I clearly wasn’t an artist. This was a few weeks before my graduating class did our thesis exhibition. I just smiled and said “thank you.” (He had nailed a bucket to a sculpture of a tree, which helped me take his feedback with a grain of salt.)

This experience also taught me the importance of perseverance. His comments didn’t stop me from continuing to draw and paint. In fact, I’ve just finished nearly 40 commissioned prints that will be put on sale in a store in New Mexico. One of the great friends I’ve made since I was diagnosed opened the store — and just happens to have pulmonary hypertension as well.

Let me bow out by saying thank you to everyone who has followed me on this journey. I wish you all the best as you continue yours. Goodbye, at least for now.

For anyone interested in following me in my next life’s chapter, you can find me at worship and tribute.

 

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

26 comments

  1. Peter says:

    I found your articles interesting and helpful, and I understand the need to concentrate on your health. I am sad that you will not be writing for a while ( maybe forever ), but everybody has different priorities.

    Take care of yourself.
    Peter

      • Robyn Doyle says:

        Thankyou Serena. I have been trying to encourage my daughter to write a blog on her life with Pulmonary Arterial Hypertension but I don’t think it would be a good idea if there is any negative feedback.

        • Hi Robyn,

          Some people find writing very therapeutic. She could do it privately in a paper journal, or create an online one and keep that one private as well. I had a blog prior to writing my column here and had little to no issues. However, it can become difficult when patients start to e-mail you should she display her contact information publicly.

  2. Sereena Adams says:

    Take care with everything you decide to do. Thank you for writing here columns. It makes me sad that you have had some upsetting contact from others; I don’t always have the same experiences that you describe but I like to read about how others cope and feel. Everyone is different but everyone can phight together against this horrible illness. You were the first person I had contact with who had PH and it was helpful to hear your experience.

    • Hi Sereena,

      Thank you for the kind words and support. You are so right, everyone is so different! I think in some ways there are some overlaps we all understand, but in other ways we deal with the disease differently. Best wishes and Happy Holidays!

  3. Brian Limoyo says:

    I Think your awesome ! I always thought you were awesome ! but I am always impressed by your grace, courage, and selflessness ! Never read the comments lol, its a masochist portal. Happy Holidays Serena, XOX

  4. Gary Haskell says:

    Hey,It does sadden, me to know you,are not writing anymore.I personally enjoyed it writting.I am less than one year diagnosed,and thought I was lucky to have found your column. I have been very active all my life, and now with PH it is very difficult.I could fix,just about anything. Hammers, screwdrivers,tools of the trade,I knew them all,and how to use them.I have now realized,I know nothing of this new technology,so now I struggle through it.I have very much enjoyed all your help, tips and stuff, to make PH a manageable part of my life. When I was first diagnosed,I could not figure out why I was still living,if it is going to be as hard as they said it would. However through lots of encouragement from columnist,like you,I have learned not to give in to the disease. You have to control it and not let it control you. You take care ❤of yourself and I am hoping to hear you’re still going to encourage others as you have encouraged me. Gary in Florida.

    • Hi Gary,

      I am sorry to hear about your recent diagnosis. For me, the first year was one of the biggest hurdles. This month actually marks 3 years since my diagnosis. I understand how hard it is not to be able to be as active as you once were. I think we all understand missing being able to do certain things, from hobbies to chores. Thank you for sharing that you found some of the columns useful, it is very nice to know that my experience was able to help in a small way. When other patients told me three years ago that things would get better, I wasn’t sure what to believe because I was struggling so hard. For me, it has gotten better and I hope you experience the same thing. Wishing you all the best a happy holiday 🙂

  5. Hoag says:

    None of your articles were that uplifting anyways. All you focused on was the disease, depressing everyone who read your articles. What you should be doing is asking God to heal you instead of Buddha, who is a false God

    • Mauro Filicori says:

      Hoag’s reply makes me better understand Serena’s decision to move on with her writing.

      Myself, being a brand new PHerson, found all of her writings to be very, very informative and presented with a sense of “savoir vivre” that is usually lacking on health groups or boards like this one.

      Thank you Serena!

  6. Joanne Sperando says:

    Hi Serena, I hope any comment I’ve left you in the past hasn’t hurt you. We PHers can be a tough lot…I’ve been crucified a few times by my fellow patients who didn’t want to hear/accept some restrictions that my doctor told me about. I think the stress of having a disease like PH can make us angry and it pops out really hard sometimes. Please be well and take care of you. I hope to see writings from you in the future.

    • Hi Joanne,
      I am sorry to hear that you can understand being on the receiving end of some difficult messages. Thank you for the kind words and support. You raise some good issues, and I think as people living with pulmonary hypertension we have a lot of difficult emotions to try and learn how to cope with. For the most part, this community has been so wonderful and supportive because we better understand what one another is going through more than anyone else.
      Best wishes.

  7. Hi Serena,

    I understand you very well, I have been diagnosed in 2005,I am from Mexico city, and I accepted IPAH as my partner in my health project ( this is how I have named this illness in my life’s project) I wish you the best luck, in the short time, to find what you need. Yes, we need sometimes to take a break or to take a better breath away of PH. I encourage you to take all you need to get strenght to fight your own battles. I admire you, because you have taken your decision, is not easy say good bye. Just want a give you a tip that have helped me and is have a have psicotherapy, with logo or tanatology … to help you to understand how we can live loosing the most precious gift : our health, and logotherapy to get meaning of your new life. HUGS
    PS I havent enough courage to write by my own my blog, I have written blogs on a website named HPAaqui.com, sorry but is in Spanish, that´s why I understand you.

  8. Anton says:

    This service will never be the same without Serena’s genuinely self-analytical voice and her selfless exposure of her vulnerabilities. Although I am now far too old to share the devastation that PH inflicts on the young, for me her writing was the human face of the disease. Courageous, if not invincible, she has made a contribution that I will always respect and admire.

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