‘Wiggle Your Big Toe’

‘Wiggle Your Big Toe’

In Life with PH
I was flipping through TV channels the other evening and came across one of the most motivational parts of “Kill Bill: Volume 1.” If you are a Quentin Tarantino fan, you may already know what scene I am referring to. The Bride has awakened from a coma-like state and is struggling to regain movement. She stares at her feet and commands, “Wiggle your big toe. Wiggle your big toe. Wiggle your big toe.” Out of sheer will, the Bride is able to gently wiggle her big toe. A grin reaches her face and she says, “Hard part’s over.”

In a way, this has become one of my many mantras for living with pulmonary hypertension (PH). Living with PH makes me short of breath, and it is an ongoing, frustrating battle. As someone who didn’t grow up with a physical disability, it’s been a hard thing to become accustomed to. (Not being able to breathe in your 20s is a whole other issue in itself.)

“Wiggle your big toe.”

Suddenly stairs and hills have become some of my biggest opponents. I look up at them with a sense of achiness in my heart. They have become a reminder of all the things I can’t do, my newfound struggles, and of how my life has changed. I look up at them and whisper, “Just breathe. Just breathe. Just breathe.”

Some days are easier than others. Every now and again, I can go up a flight of stairs with 14 steps with very few issues. Other times I find myself gasping for air by the halfway point, breathing harder than my dog after he runs to the fridge for a carrot. I can feel every bone in my body rattle as I quickly try to fill my lungs with oxygen. My mantra comes back into my mind: “Just breathe…” But unfortunately, I can’t always will myself into being able to breathe the same way the bride had willed her big toe to move.

Sometimes I feel like hell in a handbasket as I try my hardest to go up a large staircase or bravely walk across a parking lot in the winter air. Because PH can be an invisible illness, I imagine my struggles aren’t always visible to nearby observers. However, I picture myself covered in blood, dramatically crawling to my destination while gently reminding myself to breathe. As an exuberant former art student, I need my struggles to be aesthetically accurate to how I feel. (I am not dramatic, just creative!)

As I was growing up and trying to find my place in the world, I really admired Tarantino movies. They became a staple in high school because of the strong female leads (or as I like to say, “badass women”). Some of them would set themselves on fire to ensure the eventual deaths of their enemies. Tarantino’s leading actors aren’t timid little ladies, but women with a big plan and little fear. I find myself trying to gather inspiration and strength from those characters again. Hearing “Wiggle your big toe” was the reminder I needed about the motivation that has been slipping through my fingers the past few months.

After my diagnosis, I find myself digging deep to find myself again. I will be the first to admit that this “situation” sucks, but I don’t want anyone to feel bad for me. Being diagnosed has taken a lot of options out of my hands and placed them in the hands of the disease. It has made having a positive attitude more challenging, but at this point, it is one of the few things in my life that I can have control of. I’ve been trying my best to be strong, ask questions, and protect myself. I try to do these things because I want to be the heroine of my own damn story.

In fact, one of the first PH specialists I saw told me that I will die because of PH. I quickly learned that I would have to learn to be brave and start asking hard questions if I wanted a chance at survival. While chained to an oxygen tank, I immediately began to argue with him. What if I die in my 80s? What if I die in a car accident? What if I die in a freak accident trying to rescue elephants from the circus? Something about someone else trying to tell me how I will die didn’t sit well with me. I eventually decided that a doctor who already thought my days were numbered and that hope was useless couldn’t be apart of my story. I am looking for a doctor who can help, not one who is another of my opponents.

Whatever may happen, and no matter how challenging things may feel, keep trying to wiggle that big toe! Some days, weeks, months, and years are harder than others, but I have learned to try to divide my time by moments. Every time I find myself gasping for air at the top of the stairs, I whisper “Now the hard part’s over.” I catch my breath and try to prepare for whatever else may present itself in front of me.

***

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.

22 comments

  1. Kathy L. says:

    Serena,
    You are an inspiration to all people who suffer from a chronic
    illness, PH, or something else. You never give up, you give it
    your best shot. You don’t let physicians or people bring you
    down. You will live with this illness and cope as best you can,
    because to do otherwise, would be to give up, and you can’t give
    up. Keep posting, your posts give others hope.

    • Serena says:

      Hi Kathy,
      Thank you so much for your kind words and support. It means a lot to me to receive such encouraging words 🙂

      Warm regards,

      Serena

  2. Joanne Sperando says:

    Great article Serena. I’ve had PH for 18 years and one thing that continues to bug me is when doctors that are NOT that well-informed about PH, look at me like I’m going to keel over at any moment. They’re incredulous that I’ve had PH for so long. I hate that look. Anyway, you ARE the heroine of your story! Keep wiggling that big toe. Cheers.

    • Serena says:

      Hi Joanne,
      Thank you for taking the time to read it, and thank you for your comment. Learning that you have had PH for 18 years was something that I really needed today. I have been hesitant to move out with my boyfriend because of everything my doctors have told me. Your comment reminded me that they have no idea where my life could lead, and that life after diagnosis can be different for everyone.

      I am sorry to hear about the look those doctors give you. (A look I know all too well.)

      Thanks again for sharing a bit of yourself with me, and for the kind words of encouragement.

      Warm regards,

      Serena

  3. Anita (UK) says:

    Thank you for sharing. I know that ‘sinking feeling’ when faced by stairs or slope but its refreshing to hear I’m not alone! My mantra is ‘a few more steps’ – usually to a point where stopping doesn’t draw attention like by a shop window or quieter part of the street. We can’t change things, so enjoy the good days and get through the bad. Who knows what the future will bring for any of us so no point imagining the worst. I’ve had eisenmenger all my life and formally diagnosed with PH 25 ish years ago but can empathise how it must feel to suddenly not be able to do the things you used to. Keep wiggling x

    • Serena says:

      Hi Anita,

      Thank you for sharing a bit about yourself with me, and for taking the time to read and comment. I always stop and pretend to check my phone when I need to catch my breath. It sounds like we all have sneaky ways to do this without drawing too much attention to ourself 🙂 Thanks again for the kind words.

      Keep wiggling 🙂

  4. Kelley says:

    Serena,
    My sister has had PH for 14 years. She was recently in the hospital with thyroid storm and diagnosed with Graves’ disease. There is a link between hyper/hypo thyroid and PH. She’s doing better day by day, but her recovery is very slow due to PH symptom considerations for treatment. Thank God she happened to be attended by an excellent Endocrinologist! Please get your thyroid checked-in some cases, early diagnosed PH can be reversed with thyroid management. Her PH doctor, is excellent also.

    • Serena says:

      Hi Kelly,
      I am glad to hear that your sister is doing better, and hope that her recovery starts to quicken. Recovering from anything in combination with PH can always make things feel a little slower, and more complicated.

      I have had my thyroid checked, because some of my symptoms don’t really fit within my diagnosis of “idiopathic pulmonary hypertension.” It came back normal, but unfortunately, it can be harder to get clear test results for woman in their 20’s.

      I am glad to hear that your sister has the great care of her doctor, along with your support.

      Wishing you and your sister all the best,

      Serena

  5. Sidra says:

    I feel like you’re telling my story of life.i go through the the same problem and same motivation everyday. I wish there is a cure for our disease. But until then I am willing to wiggle my big toe every moment.

    • Serena says:

      I wish there was a cure too, or at least better medication options available (to everyone across the world!) Seeing something that could really improve the quality of our lives would be amazing. Hopefully we get to see something like that soon. Keep wiggling that big toe!

  6. maria garcia says:

    Serena , oh my Gosh
    You are so much like me
    Keep shining
    You are an insperation to this universe please keep up with posts or write a book
    What stage are you?
    Keep shining
    A friend of light

    • Serena says:

      Thank you for the kind words. I would like to write a book- maybe someday!

      I was diagnosed between a stage 3 and 4. I am very fortunate to be at a stage 2 now, and have been there for a while.

      Best wishes to you 🙂

  7. Red says:

    I am still waiting for a diagnosis 9 mos later… Your story sounds familiar regarding the severe exercise intolerance & trying to wrap my brain around it. Having hiked to Nepal/Base camp & Machu Pichu just a couple yrs ago… the impending doom of a slight incline or set of stairs to bed… is mostly incomprehensible to me still. It’s a catch 22 – im waiting to get into our PH clinic … but on paper I look great (cardiac)… but pulmonary … getting worse.
    So I wait. I recently read the spoon theory – it has been helpful to explain my good/bad days & energy. And I remember the wiggle your toe… I appreciate your story. Today I will remember to wiggle my toe? Cheers Red

    • Serena says:

      I am sorry to hear that it is taking you so long to get a diagnosis. I hope that you are able to get a proper diagnosis soon. I know it can be a hard journey in fighting for a diagnosis, but don’t give up!

      Wishing you all the best, and keep wiggling that toe!

      Serena

  8. Lee Ann Medina says:

    Hi Serena,
    That is me to a tee…wiggle the toe I am good to go or as good as I can be for the day. I was just diagnosed with PH 4 weeks ago, and they think I may have had it for at least 10 years previous. So, this may explain why days got harder and harder to do the things I used to do. I thought it was because of age. Here is was me, not thee as I call it.

    Now I just rest by my favorite shop for tackling the hill to my apartment. Thank goodness they put the cute little shop there for me to look at. 🙂 Or I look at my phone when I need a break, which I did before the diagnosis.

    Each day is a blessing, and when it is a not so good day like this weekend I just focused on one minute at a time. It is all I can do.

    So, thank you for the reminders…

    • Serena says:

      Hi Lee Ann,

      I am sorry to hear about your recent diagnosis. I hope that you are in the hands of a good medical team that you trust.

      Ah yes, I love going uptown or downtown and walking at my slower pace and admiring everything. Moving slower does make it easier to appreciate all of the little things 🙂

      Wishing you many good days 🙂 and thank you for the kind words and for sharing a bit about your story with me.

  9. Cindy says:

    Serena, I was 51 when I was diagnosed and like you I was almost stage 4. I am currently 56 and holding steady at stage 2. To be diagnosed so young is hard on you and I know it’s hard for your parents as well. You have a super attitude. But, don’t let having to stop and regain your breath be something that is embarrassing. Hold your head high and breathe! I wish you the best!!!

    • Serena says:

      I am glad to hear that you have improved since your diagnosis. Being diagnosed young has been really hard, but sometimes you have no other choice than to keep wiggling that big toe. (Being diagnosed at a late stage has also really made me appreciate what health I do have now.) Thank you for the kind words. I loved the advice of “Hold your head high and breathe!” 🙂 Wishing you all the best

  10. Nathan Norman says:

    Hi Serena

    My wife Kim was diagnosed with PH 17 years ago after a ASD repair ‘hole in heart’ at 33 years of age. She wasn’t given much hope in the early days which is tough when you have a very active 2 year old boy now 19. We have had some very close calls but with the help of PH specialist and access to triple therapy drugs and determination of steel she is still going. Recently things have deteriorated and she is going through a transplant assessment but we haven’t given up, it is tough being young and faced with such a debilitating disease but with the right treatment you can live a good life. Remember ask questions don’t take no for an answer and have someone by your side to help the fight keep well wishing you the best.

    • Serena says:

      I am glad to hear of your wife’s determination, and that she has wonderful support from you as well. I am sorry to hear about recent set backs, and wish you and your family all the best. Thank you for sharing, it is comforting to hear someone say that a good life can still be possible after diagnosis.

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