When You Don’t Want to Talk About PF Appointments

[Julia Johnson]

I am fairly new to my diagnosis. When I first found out, I told my son’s but I did not want to talk about it at all. I needed to process, learn more about it, process some more. I still find some of it difficult to talk about. It is tiring to me, both emotionally and physically. It is so hard to tell people how serious this is only to have them ask if I have gotten better. I hope I get used to it. For now, it is difficult.

[Charlene Marshall]

Hi Julia,

Thanks for sharing your thoughts on my post … I completely agree: talking about the disease all the time is tiring both emotionally and physically and its hard to convey just how serious it is. Hang in there and know that we’re hear for you on this forum.
Charlene.

[Marian Kremer]

I get it. I have had people tell me that they hope I’m better better. I just say thanks and move on.

[Pat]

yes, ‘get well soon’ even after i’ve told people that won’t happen is really platitudinous

[Gayle Kaune]

1.  I can usually talk to my few family members who are “keeping up” with my progress, or lack thereof but it is so difficult  during this time of Covid when my vaxxed friends still don’t “get” why I am anxious to engage in social activities, dinners, etc. unless outdoors which rainy weather here can make challenging.

2. After my last visit with my nationally known pulmonologist I was so depressed. Even when I am holding my own, he always reminds me of how this disease is going to progress.  I wanted to say, “Don’t you think I know that!” but when I got home I told my husband, “We’re getting a puppy.  We need to have something alive to focus on.! And, after arranging for the puppy’s care later on, (in case he outlives us), we DID get a puppy! ANd he’s a very positive, feisty, part of all conversations, now.

 

[Pattye]

Gayle, OMG! I keep saying I need a dog! Maybe…….Good for you!

[Charlene Marshall]

Gayle, I love the ending to this post as it made me laugh. Thank you! Puppies are the best and I’m glad he’s become a positive topic of conversation for you 🙂
Take care,
Char.

[Pattye]

Charlene, I’m right there with you. I’m newly diagnosed & it’s definitely a roller coaster ride. I’m mad, sad, irritated and just want & have thrown many temper tantrums. This is not fun! I just want it to go away……. I know I can & will enjoy life – just a different life. I remind myself daily that different doesn’t mean bad or good just different! Hugs!

 

[Adele Friedman]

It is your right to talk when you’re ready. I know people mean well, but the notion of “getting well” doesn’t apply to so many diseases. It is hard when you’re first diagnosed.

We had gotten kittens about a month and a half before I was diagnosed.  I was glad for them, and yes, we have plans for who will take them when we can’t care for them.

 

[Janet]

I understand. Since my husband started going with me to my appointments, he talks to family and friends more about my doc visits than I do. It’s good to have another pair of ears hearing all the docs can throw at you, and he takes notes too. Sometimes I feel like I’ve given up my privacy, which I don’t like, but overall I’m glad for the help. I think anyone who loves you would understand if you said, “I’m not ready to talk about it yet.” Sometimes I tell my husband I’m not ready to share some new info from a doctor visit with my grown kids, and we both zip it for a while.

[Brenda]

This is an interesting discussion. I’m widowed so I don’t have my best friend to bounce my feelings off of. My son likes to hear what the Pulmonary doctor has to say. It’s nice but he tends to put a spin on my diagnosis. I think because he gets married in December of this year. He has said he wants me here which I understand as his dad died 5 years ago of Kidney cancer. I also have a friend of 50 years that stopped calling after she found out my diagnosis. When I did see her she would ask if I’m better. The third time she did this all I said was, I will only get worse. I have 3 close people that I confide in until I’m ready to talk about this terrible disease. I have posted info about this disease in My Story on Facebook. I hope family and friends can understand this new lifestyle better.

[Pat]

oh my goodness! this is me. A friend of 50 years, a nurse to boot, said when i told her my diagnosis ‘i’ll always love you and will never forget you’ and i’ve never heard from her since! I’ve lost track of the number of people who have said ‘hope you’re better soon’. Maybe the worst though was a friend who asked me ‘how long have you got left?’. Over the months my friendships have dwindled but the ones i have left are the ones who accept, listen on occasion, but mostly just treat me as the friend i’ve always been, for them i am truly grateful.

[Jeannine Franco]

I wish my children would ask how my doctors appts went or at least ask how I’m doing.

[Charlene Marshall]

I’m sorry to hear that they don’t Jeannine. Know that we are here for you on these forums!
Take care,
char.

[Charlene Marshall]

I’m sorry to hear that they don’t Jeannine. Know that we are here for you on these forums!
Take care,
char.

[Karen Rachal]

I don’t talk about my appointments unless I’m asked.  I don’t usually tell anyone but my husband thatI have an appointment.  I quit because if I said I had a good appointment, everyone thought that I was getting better.  I’ve told everyone that I won’t be getting better, I’m just trying not to get worse.  I am not a candidate for transplant.

[Sharon MacMillan]

Dear Charlene
It may be that a support group would be a viable option if the news is difficult. We need to be able to have understanding people to share our hard news with. This is such an up and down journey, but underneath are hard realities. I was thrilled that I received OPEV but the truth is that I needed it to slow down the disease. Weird time to be happy! But when I am feeling short of breath, I have sober thoughts about what the future might be like. So if we talk to people who are ahead of us on this journey and keep connected to people new on the path, we have a more balanced network for when we feel like talking.

Just yesterday I had an angiogram. I was hoping to have a blockage so that might explain my shortness of breath and lower 02. But no. My heart is normal. Dr. said it was all pulmonary. Instead of being thrilled that my heart is good, I found myself a little sad that I couldn’t get a stent! Perspective.

This morning, I was able to connect with a new friend who is on a list for a kidney transplant. We were surprised how many things we had in common in our experiences. We both got off the phones refreshed by the other. When we are in the mood, how helpful we can be to others. If we need to ponder or regroup our thoughts, we can be free to do just that. Take care to everyone!

[mike fryman]

I find my self thinking of things after my appts, i have a tendency of making everything better than it really is.  I have been dx and on O2 3 years, it gets hard as i really don’t know how i am doing.  I know my strength is slowly decreasing but i can ride my recumbent bike, move half the yard(not big) slowly, weed wack.  It sounds like i am doing good but there are times that i have to sit down and get  my strength back.  I am 71, was a pretty good athlete so those times when i  can’t find something to do it is hard.  I was also pretty good guitar player but i struggle as i find my self asking why play……..and then i will have a couple of days of playing or working on a new tune.  But my short term memory is bad, thus i don’t remember new songs or even cool licks.  Sounds like i am whining.  It is just hard to have that feeling of being tether to a cannula, can’t hike, run, move around much.  It takes mental strenth.  I force myself away from the TV……can’t wait for John Irvings new book in October….i have been reading a little.  Then ever once in a while i will have a coughing congested episode, may take 1/2 hour to clear.  I guess i got IPF so thank you all for your thoughts and listening to me whine.  I live in colorado so have to be very aware of elevation, but i love it.  You all give me strength so keep sharing.   if anyone else has Irving type recommendations for reading just let me know, love patchett, robins, wolf.  OK time for me to stop.  Hang Tough

 

[Darlene Cochran]

Hi Charlene,
I understand how you feel, I was there when first diagnosed. Then I realized that I needed to talk about it so I could learn more, this was important since I had to live with it. Understanding it is part of the lesson. You are right, at this moment you may not improve if the meds are not for you. That said there is so much you can do to feel better and live better. Pulmonary Rehab, the thing I hate but love the results!! So glad I went thru the program. Hints and advice from others who have the disease or one that is very close in nature. Sharing what you do may make a difference. It takes a while to find your way to the place where you are ready. The sooner you find it the stronger you will be. I approach it with, yes, I am going to die, but not at this immediate time. I want to live with grace and also die with grace. Based on that I want to make choices and to do that you need to know all you can. Reading and research will only take you so far. The other people on the same journey will help you and you will help them. So, look for the support group or go to the Pulmonary Fibrosis Foundation and check out their online group, PFF voices. As for your friends there is a Family and Friends card available from the Pulmonary Fibrosis Foundation that I give to anyone who wants to know how I am. It gives insight and informs them of what you ae dealing with, it is well done. Then after an appointment or in conversation when it comes up, when someone says how are you? My response is, I am trekking on my journey and doing my best. Some days are great and others well there is bump in my road and navigating it is a pain in my toosh! If they say, what can I do for you? I say well prayers are always welcome! and it you are doing an errand you might ask me if I need anything, like a quart of milk or a donut, a smile. I may say, no I am good, I might say I could hug for a donut, or just appreciate that you thought of me. We need to make people comfortable with our journey, they cannot get there without our help. But first we have to find acceptance and get comfortable with it. Do not allow your illness to take the joy out of your life, the joy of love, memories, friendships are yours!! hang on tight the joy is a part of you. Do not die before you are dead, do not grieve your loss while you still have good things in your life. I have had to change my expectations, darn darn, but it turned out OK. There are many ways to be happy and joy is important, so I just have to reinvent me as I go. The world changes, we change, and we want to live the best life we can while we can. Saying that means I acknowledge todays best may be very different going forward. May God bless you and give you the energy and peace to travel your path.
Breathe easy, Darlene Cochran

[Charlene Marshall]

Beautifully said @constancedc1 ! Thanks for taking the time to write out and share your thoughts with the forum. Information is key to living with this disease, because we can tailor our actions and behaviours to try and live the best we can with it when we know how to do that. I’ve done several rounds of pulmonary rehabilitation and while I find it exhausting, I agree with you in that it really does help!

I know others will appreciate hearing from you too, so thanks again for sharing. Wishing you all the best.
Char.

[David Morgan]

I am 50 y/0 and the thoughts of my parents ( 70’s) and daughter ( Sr. Highschool) about my diagnosis haunt me more than my ultimate destination.  I feel like I have so much unfinished business so sharing with them and imparting the reality at this time is beyond words although I try my best to be diligent and a good steward of information for their awareness.  I lean heavily upon my Faith in God and trust in doctors but in truth its overwhelming.  Especially trying to get qualified for assistance with ofev which I cannot afford the co-pays after insurance.  I continue to count my blessings and try to live well each day and maintain hope but I often fail.

[Debra Lowder]

BRAVO. Well said, Darlene. I couldn’t have expressed it better myself.

 

[Gordon B Sandmire]

I really enjoyed reading your letter. You expressed yourself eloquently in a manner I can’t. You have a wonderful way of getting your thoughts out. Many are the same as mine but much better said. Thank you.

[Gordon B Sandmire]

My reply was to Darlene Cochran

[Charlene Marshall]

Thanks for sharing your thoughts with us on this thread, David. It feels truly unfair that not only do we have to navigate the feelings of having this disease, but that we also have to take on the implications of sharing it with others. I hope you find a way to be able to talk with your parents and daughter and feel supported. I’ll be thinking of you!
Take care,
Char.

[Barbara Slavin]

Hi Charlene,

I am also newer to PF but I wanted to ask if this is the new pulmonologist that you were planning on seeing.  If it is, please look into seeing someone else.  I had an issue with the pulmonologist that was recommended and I did not tell anyone but I also didn’t follow his directions.  Upon finding a different doctor to see, the first thing he said to me is that he sees that this other doctor put  me on some new medicine.  When I said that I did not go on the medicine because it made no sense to me, he said wonderful.  I was wondering how to go about getting you to stop taking those things.

Do what feels right to you.  It is usually the best way to handle things.

[john styles]

I am 6 years into this disease,  I call it the “stealth ” , because deterioration sneaks’ up on you.  When people ask how am I doing I tell them “good” they will say “really” and I say yes.  Cant see the reasoning for dragging out the details.  I try to stay positive and informed, and believing in God helps.  This web site is great for news articles, still trying out the 24mg Zinc with Nad+ and Sirtuin1, another member noticed the extra supplements. I am almost 70, I feel I may be cheated out of some years but then I really feel for the younger ones that have this disease, they are the ones being cheated the most.