- This topic has 20 replies, 4 voices, and was last updated 10 months, 1 week ago by
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I love this topic, @colleensteele. With some family members, I tried for years to educate them about PH. I would send my columns, articles, and educational material to them but still not get it. After many years, I decided some family members
may never get it, and I stopped using my energy to try and help them understand PH and what we live with daily. In. It is what it is. Instead, I learned that it’s OK if they don’t get it, and it’s no longer for stressing me to try and educate them. Although when they make incentive comments, it still frustrates me, I won’t lie.Other family asks questions when they’ve been at the hospital with me and will just sit and be quiet on days when I need my rest. That’s important for me when I’m at the hospital especially.
I guess my point is it will depend on that particular person; everyone deals differently. And, I have to be OK with that.
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@jenc we have been fortunate that most family and friends made an effort, whether big or small, to understand PH…maybe because Cullen was a child. I wish adults received as much understanding as children often do when they are sick.
What I have noticed is those who I didn’t think were paying attention have produced some knowledge and understanding as years went by. The brain stores information like it or not…reactions are a different story though.
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Hi @colleensteele, I’m grateful that those around Cullen and your family seemed to make an effort to learn about PH. I do find that, at times, it’s easier for some to want to know if it’s a kid with PH.
But then again, it also depends on the other person. As you mention, the mind may adapt, but their reactions never will.
I’m so grateful for those interested in learning and for the outstanding members here who understand.
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I don’t talk about my health problems with most people. The majority of my extended family don’t know about any of my health problems. I never came up with a good reason why I should tell them. A few close family members and friends know. Most of the people I work with know too, now……didn’t have much of a choice about telling them after they dragged me off a job in an ambulance last summer.LOL If someone asks I tell em, otherwise I don’t say anything.
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Hi there @wheeldog; great to see you pop in again. I bet you’ve been keeping busy with work and life.
You know, I love and respect your attitude toward many subjects. IDK if it comes from age or you’ve always been like this, but you and Manny have similar ways of thinking about things. Maybe it’s a male thing?
Your comment, ” The majority of my extended family don’t know about any of my health problems. I never came up with a good reason why I should tell them.” – is what I’m referring to. I’ve tried to start thinking this way with people I meet now.
Yeah, kind of difficult to hide with the work crew with an ambulance hauling your butt off, LOL. Take care my PHriend. Give my best to Mary Ellen.
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I’m tired of trying to tell my family who say you are always sick or I know you don’t feel like it so i quit saying anything bc they don’t understand all though my pressures run between 42 to 52 and they don’t get itso I’m grateful for my Dr’s who do all they can for me thx
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@dianna that is heartbreaking that you are not getting the understanding from family that you need and deserve. Do you have an empathetic friend you can rely on? My heart goes out to you!
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Hi @dianna, I’m sorry that you don’t have the support needed at home. Do you have others who you can talk to openly and want to understand? Please know you can always come here for support; we’re here anytime.
It certainly doesn’t help when others don’t get it. I’m sending you warm hugs and positive thoughts from San Diego.
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Well @dianna just remember you have lots of PHriends here! How is your summer going so far?
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I feel last Monday ended up in the ER but I’m better now just a little sore still it’s been hot and we have been just staying in, how is your summer hope you’re doing well ❤
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Hi @dianna, I hate that you had a fall that landed you in the ER. But, I’m happy that you are better and hope that your soreness will improve each day. Do you live alone?
Please be careful.
That heat wave is hitting so many this week. Where are you located again? Stay inside in the cooler air and stay hydrated, my PHriend.
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Thx everyone yes I’m better, and they dont understand, so I give up and text the people on here! And I live in Oklahoma city and my disabled daughter lives with me and I don’t know what I would do without her she helped me through my fractured pelvis, I’m so blessed and grateful and thankful for every day God bless
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Hi @dianna, I’m happy that you are better. That’s good news that your daughter can help you. May I ask what type of disability she has? Is it a rare disease or something else? You don’t have to share if you rather not.
Yes, we are here anytime. But still, it saddens me when those closest to you don’t get it. I relate to giving up after so long; it can be draining. I prefer to use my limited energy on something more productive.
I love your gratitude. We all should remember that we continue to have so much to be thankful for. Yes, ma’am, we are blessed.
Please stay in the AC; I know OC can be sweltering in the summer months. Rest and stay hydrated.
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Her disability is mentally disabled and 54 ,we have been together all of her live and I wouldn’t have it any other way ❤you stay cool and in AC its a hot one today ???? ???? ❤
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Hi @dianna, I’m sorry that your daughter has a mental disability. But I am grateful that you live together and sound like you help one another. That’s great for both of you.
So, it’s been you and her only. Is she your only child? My daughter’s an only child; she no longer lives at home. She’s a young adult, married, busy working and doing life. But when she was living at home, she was a tremendous help.
Of course, I’m blessed with my supportive hubby, Manny. I don’t know what I would do without him.
Yes, ma’am, I’m in San Diego and have the windows open and fans on today. The high is supposed to be 77. But I’m familiar with that southern heat and humidity. We moved from Texas last year. Take care of yourself.
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Hi Jen I had 2 daughters and lost one to suicide ???? 28 yrs ago but she gave me 2 wonderful boys that have grown to young men and both are married and I have 8 great grands I’m so happy that you have a supportive family! I have truly enjoyed our conversation here ❤ talk I mean text ,I wish Oklahoma was 77 oh for some cool are its supposed be 99 here!!!!
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Hi @dianna, my heart aches for you. I can’t imagine how much pain you have in losing your daughter to suicide. I can tell that you focus on the positives, the silver linings perse. Your 2 grandsons and their families sound lovely. Your love and pride for them shine through your words. Do they also like Oklahoma?
My extended family is the ones who never get it. But I gave up trying after so long. I was diagnosed 17 years ago. A few years ago, I started going to therapy which helped me learn that they will probably never get it; why waste my energy trying.
When I feel the breeze, I’ll try and push it your way to help cool it off. I’ve been through many years of those summers.
Hugs to you are coming from San Diego. I’ll be back on Monday.
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Hi @dianna, I’m sorry that your grandsons don’t get it. Are they young adults? I find that often at that age, they are so busy learning about life and discovering who they are that they can’t grasp anything as overwhelming as PH. But it doesn’t mean it’s easier for you when they don’t understand. Please remember that we are always here and understand and want to support you.
This is a safe place. I’m grateful you felt comfortable enough to share such a personal tragedy. It must be tough for you to talk about it. Vent here anytime; that’s what we are here for.
We send lots of air hugs and love through the forums. Pop in anytime you need an extra dose. I hope that you have a lovely week ahead.
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