So frustrated about telling my non cf friends about cf

[Iamqueenofeverything]

The title says it all. I was telling my close pal about the testing for my lung transplant and how I don't need my parents to be with me for every single test. I'm health and not in the hospital but do need a transplant in the near future. I'm going to check into the hospital hotel room so I won't be drive 25 miles to do the testing and 25 miles home. I do want my parents to be there for some things like orientation and for when I go under for some things. My parents want to be near me 24/7 at all hospital stays and testing and doc visits. I was trying to say I don't need them for all but some things bc I'm 35 and dealt with cf from 3 months. My friend made me feel like a spoiled brat and laying down the law and saying you can do this and that. I guess I have a few ?s. do you want someone with you with all the doc visits and hospital stays and test? Do you go to a few cf things alone? Where do you draw the line of having someone with you and doing things alone? Do you feel like people just don't grasp your cf problems when you want to talk about it,

 

[running4life]

First of all, a true friend doesn't judge or condemn you for any decisions. A true friend accepts you exactly where you are.

I am 26 and have gone to my CF center alone for the past 8 years or so. Mine is 90 minutes away. When I was sick last year, I asked my Mom to come with me. When I was hospitalized for 3 days, she drove over each day and so did my uncle. I didn't ask them to, they CHOSE to. I go to regular visits alone, unless I'm not feeling so great. It's not a good idea to go alone if you aren't feeling good or big decisions are being made. Having another set of ears is important in these situations.

My best friend gets my CF to the best of her ability. We talk about it, she protects me from what she can, encourages me to do my treatments, and encourages me to take the best care of myself possible. She is never going to fully understand my CF, just as I cannot fully understand who she is. It's just about accepting each other where we are, what our limitations are, and loving each other past them.

I am sorry you are frustrated, but remember that they haven't walked in our shoes and don't know what it's like. Don't allow someone that much control over your feelings. Take care of yourself and if that means having someone with you, then so be it. Don't be ashamed of who you are!

 

[Printer]

You are 35, so I'm guessing that your parents are about 60. Trust me when I tell you this;, you will see the day that you will wish that your parents could be with you (and you with them).

Love and enjoy what you have before it is taken from you.

Bill

 

[Iamqueenofeverything]

I know friends mean well, I know the truest friends will me never know what I go through, I had to tell my friend that all I need Is someone to listen and when I want her advice I will ask and unless she sees me go a dangerous advice or being hurt than say something. I also said I try not to advice people unless I experience a similar thing or if I'm asked bc I never will understand or know the whole pic. I know it's sooo easy to say what you would do in another persons shoes.

 

[Iamqueenofeverything]

My parents are in their 60s and in not so best of health either. I do want them around when someone is consultanting me but I don't really expect them to be there for the small stuff. I do love and treasure them daily. I need to start taking them now and need to do what's best for them. Someone sitting in a hard chair while aching or sleeping does not help me or someone's hurting in their knee dies add more stress in a stressful or sick time. I was trying to explain that their health is just as important as mine and I need to start doing the smAll things on my own. After all, the older parents get the harder it is on them. They refuse to let me do the same as well like I don't go to every doc visit with them. I got frustrated with my friend bc she was nickpicking every thing I say. I know she thinks if I just do what she advises then it will b ok or just deal with it bc it's only a week. As you know with cf it's never just a week of docs and visits its your whole life if this. I guess I ws venting and seeing what other ppl do in my situation so I can be sure I'm not flying off the handle with friends or family

 

[Printer]

Queen:

I understand, I really do. It is a very difficult mix.

Bll

 

[Iamqueenofeverything]

That's why I like coming here. Everyone understands.

 

[Kyrav]

My mom comes with me to every transplant dr appointment/meeting, I think it's important because she's going to be my primary caregiver afterwards so having her know as much as possible I think is a great thing. My dad comes to the classes and meetings but not necessarily all the procedures. My transplant center is in another state so sometimes it's not easy to get the time off of work for him. As for regular cf clinic appointments depending on who is available, one will usually come with. I apparently am not very good at relaying the information I'm given. But if I need to, I can go alone. And hospital stays, no one stays with me, but they do visit almost daily and call/text all the time.
I think it's actually really good that your family wants to be so involved, I hope my parents are still like that as I get older. And I'm sure most people would agree that they're friends don't truly get the full grasp of what cfers go through at one point or another. If this person in particular makes you feel bad about what you're doing then maybe it's time to find a new person to vent to?

 

[Iamqueenofeverything]

Been thinking about that myself. I actually said that I'm not looking for advice and when I do I will ask. She was alittle offended and said she wouldn't give me advice at all.

 

[Jennyvb17]

I find most healthy people don't understand it.

Im 30. I go to clinic 3 hours away. For regular healthy visits I go by myself. When I'm admitted or think I might be admitted, a parent will drive me over. They usually don't stay and only come back on weekends.

Regular people think this is neglectful of my parents, think I must feel terrible that they are not there.

For me it is a relief, I'm not great company when I am sick. My parents go stir crazy. So far I haven't had anything crazy with my admissions, and definitely not something I can't handle.
People forget we have grown up dealing with medical situations, medical people, and medical procedures. They don't make us uncomfortable and we ask questions and don't let medical professionals steam roll us.

I think friends are over protective sometimes cuz it's scary to them. They probably haven't been thinking about the fact that you need a transplant, we've been thinking about it since high school, and are used to the idea. Give them time to catch up and stop being scared

 

[Nugget1]

My daughter is only 6 with CF so I don't have any experience as an older cfer, but my husband and I are older parents and God willing she will continue to do as well as she is and when the time comes will be able to go solo for regular appointments. I am hopeful that she cultivates friendships with people who are willing and able to step in at some point if her father and I can't. Even people who don't deal with CF should always take someone with them for major events, an extra set of ears or someone to ask a question that you may not even have thought of never hurts. At the present time my daughter always answers the doctors questions in the best light but I find it necessary to provide the correct information. That doesn't hurt either since accurate and honest information will help the doctors provide the best care. Surround yourself with people who can best help you to be your best. My daughter is an only child, is she spoiled, yes but I think people enjoy being in her presence because she is happy and carefree. I am the person most responsible for her treatment and even I don't get what she is going through but my best is helping her to be her best, nothing more, nothing less.
Be well