April 7, 2018 at 10:13 am #11674Charlene MarshallKeymaster
Hello wonderful forum members,
I am contemplating a lot today as I reach my two year post-diagnosis date. I have been living with IPF since April 7th, 2016. I wanted to make a personal post to my social media pages, using the image above, about being grateful for each day, or living through the many storms of this disease. However, I couldn’t bring myself to do it because it all seems to cliche.
Somedays I am grateful as my IPF has given me opportunities that I never would have had without it. Sometimes I feel stronger because of my disease: knowing I can face all the issues that come my way (health-wise, financial, etc) and get through to the other side with more tools in my emotional / coping ‘toolbox’ than I had before this disease. And other days I am just angry because I don’t want to be living with IPF. Today is one of those days.
How do all of you deal with your diagnosis anniversary, and reaching yet another year of living with IPF while also getting closer to the life expectancy of this disease? I know prognosis is just a number and many people far exceed the life expectancy of IPF, but some don’t and this is playing on my mind today. Do any of you have a ritual or “treat” yourself to something on your anniversary date? I’m not sure what to do with my day today and would love to hear from you.
Thanks in advance!
April 9, 2018 at 4:46 pm #11705Aishia MoaishiaParticipant
Charlene! First a BIG OLE HUG for you!
I haven’t really had an anniversary date yet. Although in was spring 2015 when I was told I had ILD, it wasn’t until December 2017 that I was really informed how serious my disease is and that there is a relatively short life expectancy.
My advice is this, post the stuff on your facebook cliche or no, if it means something to you than it will to your friends too. Nearly every day I post something about positivity and living life to the fullest. Its how I feel so I share it. I also share the days when I am feeling whimpy and scared.
I can’t imagine how it feels coming up on the anniversary date but one thing I did learn about my own disease is that there were beginning signs showing on a CT scan I had fall of 2011. So I have had this for 6 1/2 years and I am still here.
I say focus on living while giving yourself grace when the fear and grief come at you. Feel those feelings too but dont stay there too long. As for today I say treat yourself to celebrate living 2 years with this disease. Take a bubblebath, get some icr cream.. whatever it is that will put a smile on your face. YOU ARE AMAZING AND YOU ARE ALIVE !
April 11, 2018 at 8:02 pm #11739Charlene MarshallKeymaster
Aishia – thank you so much for your wonderful comment on this thread, my lovely friend! You are just so great 🙂
I appreciate your sharing your experience about how you use social media to reflect how you are feeling. You are right, with my friends if it is important to me then it will be to them, I agree. This is a message I need to remember. As we’ve talked about before, we’re very lucky to have the friends we do and I know I can share anything with them. I just felt a little “stuck” on my anniversary date (and of course was feeling unwell) and didn’t know what I wanted to share so I guess I chose not to share anything. Some of my friends are amazing though, and they remembered the anniversary date and reached out!
I am also going to take your wonderful advice, now that I am feeling a bit better, and do some celebrating this weekend. Getting some ice-cream is an excellent idea! We are alive, and I am thankful for YOU putting a smile on my face tonight 🙂
Cheers to you,
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