My Smile Is Hiding Chronic Pain

My Smile Is Hiding Chronic Pain
0
(0)

If you saw me you would probably notice my bright blue eyes (thanks, Pawpaw) or my huge smile. You might not realize that behind the smile, I am hiding something.

I have been hiding the chronic pain that has been affecting me for a long time. It’s not that I’m being dishonest about it, I simply prefer to smile and laugh instead of crying. I’m certain that I’m not the only person with pulmonary hypertension (PH) who can relate to that.

Last week, I ended up in the emergency room with ongoing chest pain, pressure, and tightness related to my PH. My entire body felt like I had been run over by a truck. I already had pain medications, but the maximum dosage provided no relief. Usually, these medications, along with rest and oxygen, offer some relief. But this time they didn’t, and I was admitted to the hospital for several days for pain management.

My PH doctor ordered intravenous pain medications. The pain management doctor was wonderful and implemented an effective plan. Unfortunately, she doesn’t have an outpatient clinic, so I will need to follow up with an outpatient pain management specialist. I am not happy about adding another specialist to my list of doctors, but I know that discovering new ways to relieve my chronic pain will improve my overall quality of life.

Some of my PH medications can cause pain, which adds to the chest pains. On some days, I just want to hide under a blanket. On other days, I want to cry. I don’t often cry, but last week I did just that — I sat and cried. I must have looked pitiful, but I was at my breaking point.

My chronic pain has several sources, including chronic kidney disease that causes me horrific back pain at times. Some people with PH may have site pain caused by subcutaneous medications. Others, like me, also deal with the side effects of oral or intravenous medications.

Pulmonary hypertension has affected me for almost 15 years. Chronic pain, which I’ve also dealt with for years, is an added perk. I’ve tried to block it mentally by thinking it will go away. But it always seems to return. This time, it has affected my body for nearly a week without remission.

I was told several years ago that I should try a pain management specialist, but I didn’t think I needed one. At this point, I think my next plan is to have medications available so that the pain doesn’t spiral out of control again. I can no longer continue to ignore it, which only makes it worse. I have been covering up the fact that I’m dealing with so much pain, even from my family.

Living with a life-threatening illness like PH is taxing on my mental health. With chronic pain, it’s even worse. I’m frustrated, apprehensive, and scared, as I’ve never been someone who takes pain medications. But I realize that my current demeanor isn’t normal, and that also frustrates me.

Chronic pain can be debilitating and prevent us from enjoying life to the fullest.

Do you experience chronic pain related to your PH? How do you manage it? Please share in the comments below.

***

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.

Jen Cueva is a “ well -seasoned” patient who has been living with pulmonary hypertension (PH) since 2005. Although her favorite place is Southern California, she now lives on the Texas Gulf Coast. She lives with her supportive and comical husband and their Mini Schnauzer named Sasha. Prior to acquiring pulmonary hypertension (PH), she worked in nursing, which she wholeheartedly loved. She enjoys cooking for her family, listening to live music, and sitting by the water. You can also find her visiting local coffee shops with her daughter(as she writes or chills) or at a medley of restaurants. She’s a total foodie! In her weekly column, ”Worth the PHIght ”, she delves into the rollercoaster of emotions that she faces living with PH. She hopes to share her challenges and tips while touching on current topics with other PH patients and their caregivers. Her goal is that by sharing her PH journey, she will inspire and instill hope in others. Together, eventually, we will find a cure for pulmonary hypertension- Never give up hope.
×
Jen Cueva is a “ well -seasoned” patient who has been living with pulmonary hypertension (PH) since 2005. Although her favorite place is Southern California, she now lives on the Texas Gulf Coast. She lives with her supportive and comical husband and their Mini Schnauzer named Sasha. Prior to acquiring pulmonary hypertension (PH), she worked in nursing, which she wholeheartedly loved. She enjoys cooking for her family, listening to live music, and sitting by the water. You can also find her visiting local coffee shops with her daughter(as she writes or chills) or at a medley of restaurants. She’s a total foodie! In her weekly column, ”Worth the PHIght ”, she delves into the rollercoaster of emotions that she faces living with PH. She hopes to share her challenges and tips while touching on current topics with other PH patients and their caregivers. Her goal is that by sharing her PH journey, she will inspire and instill hope in others. Together, eventually, we will find a cure for pulmonary hypertension- Never give up hope.
Latest Posts
  • positive
  • chronic kidney disease
  • pause
  • Rare Disease Day

How useful was this post?

Click on a star to rate it!

Average rating 0 / 5. Vote count: 0

No votes so far! Be the first to rate this post.

As you found this post useful...

Follow us on social media!

We are sorry that this post was not useful for you!

Let us improve this post!

Tell us how we can improve this post?

6 comments

  1. Cathy says:

    I suffer from chronic pain not related to my ph .
    Through trial and error I have designed a plan that has improved my life . I discovered CBD . It contains no THC . I found a water I like and it works great for me . The store owner said he can’t keep it in stock as it flies off the shelf . I take 2 Advil and 2 Tylenol in the morning and I can actually move around easily.

    • Jen Cueva says:

      Thanks, sweet lady for your feedback. I have tried CBD in many forms and no relief. I am happy to hear that you’ve found a combination to work for you. That’s what it’s all about, finding what works for us.
      Hugs and love,
      Jen

      • Jen Cueva says:

        Hi Gail,
        Thanks for reading.
        I actually do deal with some stomach issues. Most of my PH meds have gastrointestinal side effects.
        Be sure to let your medical team know if you haven’t yet.
        Kind regards,
        Jen

  2. Now that I’m on Remodulin subcutaneously, managing site pain and the pain in my extremities have become real issues. I’ve tried CBD but found no relief. A 1:1 tincture of CBD/THC did help with pain, but I found the physical disassociation from the THC to be so unsettling that I chose to discontinue using it. If I can’t function with the pain, not being able to function with the relief was just as bad in my opinion.

    At this point the only thing that helps is Oxy. Luckily, I seem to be able to manage with a low dose and am able to monitor my own usage. The stuff is so scary though, so I would love a less addictive-risk option. Cathy, what brand of CBD water do you use? I’m willing to give that another shot.

    • Jen Cueva says:

      Hi John,
      Thanks for reading. I am sorry to hear that you are struggling with pain, too.
      I am happy to hear that you have some relief, albeit a low dosage of pain medications.
      I, too would rather not take them, but I also want to live life to my fullest despite my PH.

      Kind regards,
      Jen

Leave a Comment

Your email address will not be published. Required fields are marked *