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    • #34422
      Colleen Steele
      Keymaster

      Do you use supplemental oxygen, a wheelchair, or other medical equipment? Are there other aspects of your physical appearance that people notice and react to when you meet them? When out and about do strangers acknowledge you as they would any other person or do the interactions often feel different?

      Halsey Blocher, a Spinal Muscular Atrophy News columnist, recently wrote about how much she enjoys having her nails manicured at a salon. She appreciates their willingness to accommodate her when usually people shy away from gripping or moving her hands. In her column, “How Someone Handles My Hands Makes a Difference” she also mentions how meaningful it is when people shake her hand without hesitation.

      Can you relate to Halsey’s column and if so, what has your personal experience been?

    • #34427
      Jen Cueva
      Keymaster

      Thank you, @colleensteele; Halsey’s column sparked emotion and speaks of such a beautiful yet straightforward gesture that positively impacted her. I loved this piece, too! If you’ve not read any of Halsey’s other columns, you would see how everyone is drawn to her.

      I can relate to her column when dealing with oxygen and using a wheelchair and the electric carts at times. Often people look and make comments about smoking when they see my oxygen. I’m not a young chick anymore, nearing 50. But when I was diagnosed at 30, people would approach me differently and tell me I was “too young” to have oxygen and be sick.

      But with approach, others can be standoffish or curious about the oxygen and use of wheelchairs. I approach myself like everyone else. Anyone who knows me much knows I talk to everyone. Already at my local Ralph’s, SBUX, and Boba Tea place, the staff all recognize me, but this is usually because of my oxygen.

      Since COVID started, many have thought I’m contagious and keep a distance from the general public. Although, I respect that and say Hi from a distance.

      • #34434
        Colleen Steele
        Keymaster

        @jenc people do love to make assumptions. It’s sad really. The smoking comments would make me want to throw something. You have so much spunk though and I trust you don’t let those people get you down.

        • #34440
          Jen Cueva
          Keymaster

          LOL, @colleensteele, yes, I do often want to throw something. But then I think about it and educate them most of the time. But some days, when I already am not feeling my best, I don’t care to take that few minutes and educate others. This may be the best time I can choose to do it.

          I’ve also had many people ask questions about my oxygen and are interested in a POC for themselves or a loved one. Those are usually the ones I interact with longer, as I know they want to learn more.

          Last week, I had oral surgery and still have sutures in my mouth. Then on Friday evening, playing with my friend’s Frenchie, Guinness, his head my mouth. I now have a busted lip and look like someone punched me. Now, I’m sure I’ll get looks when I go to the grocery store this week. This makes me more self-conscious, mainly because I know what most assumptions will be.

          I’ll need that “spunk” reminder to allow any judgments to roll off my back. Thank you for your continuous support.

        • #34447
          Colleen Steele
          Keymaster

          Oh no @jenc! Ouch! Needless to say, don’t let that get infected. I bet it even hurts to laugh. I’m so sorry!

          I agree, negative reactions from people can prompt an educational moment. I’ve mentioned here before that we always carried around the little pocket PH wallet cards that provide basic PH information. The PH Association offers. They use to mail them out but now you can print them from a PDF provided. If there isn’t time or energy to verbally educate people you can at least hand them the card and hope they read it.

        • #34450
          Jen Cueva
          Keymaster

          Hi @colleensteele, yes, I’m cleaning it and watching for any signs of infection. Yeah, it does hurt to laugh. Although today, it’s looking better, thankfully, because I am going back to the dentist tomorrow.

          I still have a few of those wallet cards. But I found I was sharing those most often when I was first diagnosed with those who would ask questions. You’re right; it’s tiring to educate some days. Like you, I only hoped they would read it once I shared it.

    • #34448
      Kathleen Grady
      Participant

      I can remember the first time I went to the pool at my apartment complex. I am on IV remodulin so my pump and line are visible.  You could hear a pin drop as I was walking to my chair.  A little boy came up to me and asked what was wrong with me, I was so happy that he did. Literally everyone at the pool was trying to hear my answer so I spoke louder than normal. You can feel the line by my jugular, so I told him to feel it, (kids think it is cool). it made it less frightening for him.

      My favorite it: my friends are all used to my pump and now everyone at the pool is too, so I do not get stared at a lot.  I was at an event with friends, but the majority of the people I did not know. I had a cute shirt on, but my line was very visible. I was walking across the room and noticed people staring at me. My first thought was, gosh I look good everyone is looking at me, then I realized they were staring at my line LOL. I told my friends this and we laughed so hard.

      • #34451
        Jen Cueva
        Keymaster

        LOL, @kgrady69, I love how you felt so secure you thought they were noticing how cute that top was on you. And, I bet it did, but they can stare at both, right?

        I can relate to the pool comment but only because of my oxygen, not an IV line. I’ve had kids ask, “what happened?” One neighbor’s 4-year-old said, “oh no,” when he saw me this weekend. I noticed that he was referring to my oxygen cannula. Funny, this was the first time he had noticed, although I had it on before.

        Kids genuinely do say the most darn things. But they also enjoy learning, and I find are more open to discoveries. Adults can learn from them.

        I’m happy that you’re enjoying some pool time, and it sounds like you also have a supportive group of friends.

      • #34455
        Colleen Steele
        Keymaster

        @kgrady69 I love your attitude about your line. It’s similar my son. He was on IV Flolan for 6 years. The stares never bothered him and he was always good about being patient with curious little ones who would ask him questions.

        It’s interesting. Our experience has been that it’s the adults, not the children who will gawk and be rather offensive. When Cullen wore his mask pre-pandemic children would sometimes ask him why he was wearing it or even say they thought it was cool. But adults would often stare in not so nice ways. One time a grown man kept staring Cullen down and eventually walked up to him and very sarcastically asked, “What’s with the mask”.

        Cullen gave me a look to back down and he just simply responded, “I received a transplant and this is for my protection” and the man walked away. AGH! I was so annoyed but Cullen wasn’t bothered at all.

        I cracked up at your story, “Gosh I must look good…” Girl, I’m sure you did look good, line and all!

    • #34449
      Randolph Reynolds
      Participant

      My wife says I should name my oxygen tank carrier ‘Maleficent’.  When I go to a restaruant people glance up at me and I smile.  Sometimes I feel like throwing the tank at some obnoxious person but its because I get frustrated with the tangle of tubing. Occasionally people ask if they can help me, especially when I am changing to a second tank.  Maleficent usually gives me the right of way.  I don’t think anyone notices my infusion pump.  Fortunately I’m not connected by and IV.

      Cheers

      • #34452
        Jen Cueva
        Keymaster

        I love your wife’s suggestion, @ripple76. How is she doing, BTW?

        Finding myself frustrated when lines tangle or don’t go as smooth as I planned, I relate to the desire to throw that tank at some. Some smile as I walk by, too, and others tend to gawk. These are the ones I would like to toss at some days. But then I realize I am better than that and try to refocus my energy and enjoy my outing.

        Thanks so much for sharing; I hope you and your lovely wife enjoy a relaxing week. How’re the temps around there? Staying cool as you can?

      • #34456
        Colleen Steele
        Keymaster

        Ha! “Maleficent” I love it!

        How was your weekend @ripple76?

    • #34482
      Sarah Beth Shingler
      Participant

      I am on IV Remodulin, and I hate the CADD Legacy Pump. Even though IV Remodulin is the best form of therapy for me (my cardiologist and I have gone in round after round about it) I don’t care if people stare at my fanny pack or if my line is visible. I had someone at one point mistake it for an insulin pump, and I explained about PH.

      I get more self consious when people look at me on the days when I my hair might be dirty because I didn’t have the energy to shower. And people don’t understand having limited energy sometimes you pick and choose what gets done.

    • #34492
      Jen Cueva
      Keymaster

      Hi @sarahbeth31819, I love this important point you make. I am often more self-conscious if my nails aren’t done because I don’t have time or energy to get them done, or maybe this month, my medical costs were too high. My hair is often much more important to me, like you. Perhaps because I can usually control my hair more than my body. Unfortunately, I’m on day 4 with dry shampoo because I’ve not had the energy to wash my hair the last two days. I usually have to do mine in steps. I shower and wash my hair. Let it air dry a tad, then using my foldable stool, dry my hair. Then after a break again, I need to use my seat and straight iron my hair. Thankfully it’s short, and I have baseball caps for those days. But I still feel yucky, so I relate. This was an older post about washing hair think you probably can relate with.

      With you being comfortable with your line and choosing that time to educate and raise more awareness, I applaud you. Thanks for making these statements. Thanks for sharing. Enjoy your Memorial Day weekend.

    • #34507
      Carol alexander
      Participant

      Now that I have to go out alone since my husband passed I feel very self conscience most people are very nice. My portable oxygen is ok but it doesn’t give you as much time as they say it should so Iam always nervous. I always have trouble with the hose and at home it is always tangled . I bussed my hair it was to much trouble to care for and just came back from skin doc I look like I was hit by a car. I hate to go out I know what I look like but I have no choice

    • #34521
      Jen Cueva
      Keymaster

      Hi @carol-alexander, I hate to hear that you feel so much more self-conscious now that you have to go out on your own. It must be difficult for you to go out after having him with you. I’m sorry.

      But, I’m grateful to hear that most people are very friendly to you. That’s funny because I am on oxygen in a motorized cart at the grocery stores, and older people try to help me more, and I try to help them, too. A few of the younger crowd ask if I need them to grab anything for me, etc., but usually, I find it’s the older crowd. How about you, is it every one of all ages?

      About your hair, what about wearing cute hats or scarves? Is that something that may help you feel better about yourself? Big hugs are coming your way, my PHriend.

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