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When Have You Felt Most Rare With PH?
Living with PH, a rare disease, is challenging. However, feeling rare is a totally different feeling. It can make one feel “awkward” in various settings.
Think back to a time when you have felt most rare. You must have experienced many different emotions. Some may feel isolated, alone, or frightened. Share your experience and how this made you feel.
At what moment did you feel most rare? How does this inspire your push for awareness?
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12 Replies
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I am really feeling that this week. I have the opportunity to go to use the treadmill at the community college gym about 2 blocks from my house. This would be great for me. I could walk without carrying a tank on my back. This is important because I’m starting to get back pain from it. I could use my pulse ox while I’m doing it so I could see if I need to adjust the flow. But I can’t get myself to walk in that door because I’m wearing oxygen. I think especially because it’s young people, I just feel so self-conscious about the oxygen cannula. So I’m feeling “rare” and not in a good way.
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Aww, my heartaches with you, @catbrown. I can relate to feeling “rare” and self-conscious using oxygen. I went to the gym recently and felt that as soon as I walked in. All eyes felt like they were on me. However, I knew I was doing something to keep my body strong, and they could stare all day or do their workout.
This happened the first few times; however, I was not so self-conscious as I walked in after that. I wore my cute workout clothes and new tennis shoes and came in with my head held high.
Yes, the gym is about 3 minutes from our condo. It, too, is full of young ones. I haven’t been this new year, but once, because it’s too packed and has so many germs this time of year. Once the new year’s resolutions wear off, it will calm back down.
I’m sorry that you are struggling with this. Go in there with your head high and a massive smile. You got this, my PHriend!
Thanks for sharing such a personal struggle with us.
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Aww, thanks for the encouragement, Jen! I’m going to do go today. I think. I’ll keep you posted.
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Awesome, I love that determination and attitude, @catbrown! Yes, please do keep us posted! Please do it for yourself!
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Dang, I went and they were closed. They have weird hours because it’s a small college. So next week!
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Hi @catbrown, I’m sorry the gym was closed after you were so motivated to go. I bet today you are feeling good and ready to tackle the gym with your head held high!
I love the suggestions that @colleensteele offers. I do buy cute tees and workout things that I may “fit in” more with the others and also will distract from my O2.
This weekend and on other occasions, I’ve noticed that some people don’t even act like they notice my oxygen. Manny and I went to brunch on Saturday, and when he asked the hostess for a table close by the door and restrooms, she looked at us both funny. He then pointed out that I was on oxygen and couldn’t walk too far.
Maybe it was my “Fuggs” (fake Uggs, as I call them, hehe) and my cute sweater and leggings that distracted her.
You can do this!!
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@catbrown I can understand feeling self-conscious about walking into a gym with oxygen but keep this in mind, no matter what age is of the other members I am willing to bet they are all feeling self-conscious about something too!
Have you tried distracting yourself from the o2 by wearing something that you love? Maybe find yourself a pretty shirt or a shirt with a powerful message to work out in. If you wear earrings to the gym maybe buy yourself a special pair that is just for workouts. Maybe find something to wear or carry that you think might distract people from your o2, or at least will distract you from it.
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That’s a great idea! I’ll try it.
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Honestly, when I’ve been admitting to the hospital?! The admitting nurse, once I’m in a room, it is as though she’s never heard of PAH…? (Also know – I am ON the Cardiac Unit Floor) It baffles me and causes me great concern that there are nurses caring for my health that have never heard of my diagnosis. How does this happen? Now before I get ‘pounced-on’, I realize nurses are not Drs. with ‘specialties’, but it does give me pause-for-thought of my basic care whilst in that hospital. Anyone else experience this type of “blank stare of no-comprehension” from nurses that are caring for you? Just curious if it’s just MY Hospital, but it’s one of the best rated facilities in Nashville TN area. Any Thoughts Y’all???
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Hi @rebakittymama, unfortunately, you are not alone. I’m sorry that you’ve experienced this. I, too, have been there, and many readers will probably relate.
Most often, I’ve encountered this at smaller hospitals. However, I’ve had nurses who had no clue what it was and often referred to it as “hypertension.” This is dangerous because my BP is low, so telling others I have “hypertension” instead of PH is not safe.
When I encountered this issue, I often tried to educate the nurses. Some have been newer nurses, others not. Because I have had PH for almost 18 years(next week), others in nursing think I should be dead from what they have heard of PH. I again try to educate. Not all are so open to education. They know it all, yeah, right!
As a nurse myself, I was on the other side before PH. I had only heard of the work of pulmonary hypertension, not much else when in nursing school. They are not educated on PH much. So that is where the issue lies.
Now other nurses are familiar with PH, especially on the heart units, and do an excellent job caring for me and others with PH. It’s frustrating when you are there and have to worry about who is taking care of you. I’m sorry you’ve experienced this.
I am grateful to have my hubby, Manny, who advocates for me when I can’t. Do you have someone to support you when you’re admitted?
Thanks for sharing your thoughts on when you feel most rare. Hospitalization is not a place we want to feel rare, but sadly, we are.
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@rebakittymama as @jenc mentions, you are not alone having this experience as a PH patients. It’s a sad reality that many in the medical field are not as aware or educated about PH as they should be.
I think I have shared the following experience before in the forums but this topic brought it to mind again. It’s similar to yours.
My son was 8 when diagnosed with PAH. He started oral treatments first then a month later IV Flolan was added. The central line was always a clue to medical staff that he was fighting something serious but prior to the line being placed I had to take him to the ER one night. I remember he was having series chest pains.
The ER doctor walked in and asked what was going on and I began with, “Cullen has PAH”. The doctor responded, “No, he doesn’t. He is only 8 years old so you are confused with something else”.
Having fought for 2 years to get Cullen properly diagnosed it was heartbreaking to not be taken seriously less than a month later. With clenched teeth I pointed out that obviously she walked into our room without reading his chart first! Then I helped her by calling Stanford for her and getting Cullen’s PH nurse on the line.
Apparently the Stanford records weren’t in the WA hospital system but once this doctor received them I could tell she was embarrassed. No apology but hopefully she made an effort after we left to learn more about PAH and that children can have it as well!
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Hi @colleensteele, it’s frustrating and infuriates me that we continue to need to educate those working in healthcare about PH. As you mention, after fighting for a diagnosis, we can only hope they will want to learn and that our education and PH awareness helps with future patients.
Thank you for your work and continued awareness efforts for the PH community!
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