@charlene-marshall
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Charlene Marshall started the topic Mental Health & Chronic Illness Advice in the forum Living with Pulmonary Fibrosis: 50+ 1 day, 18 hours ago
Hi Everyone,
I was recently invited to be a guest on a podcast for another rare disease community. There were four guests total, representing various rare diseases and the topic we were discussing was mental health and chronic illness. This podcast topic was particularly focused on women for this week, but a lot of the advice can be applied…[Read more]
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Charlene Marshall replied to the topic How Do You Cope with the Funeral of a Fellow IPF Patient? in the forum Join the Discussion: Welcome to all PF/IPF Patients 5 days, 15 hours ago
Thanks for your kind words and suggestions @christie-patient. Always lovely to hear from you and your perspective. I didn’t realize that is what was happening; grieving in the public eye of a small community but you’ve absolutely nailed it. I appreciate your thoughts and YOU, thanks for writing.
Char. -
Charlene Marshall replied to the topic How Do You Cope with the Funeral of a Fellow IPF Patient? in the forum Join the Discussion: Welcome to all PF/IPF Patients 5 days, 15 hours ago
Thanks for sharing your thoughts, Fred. I agree – so important to speak with the family members about the person who died as a person-first, not victim of this disease. It’s hard when we’re living with the same disease I find.
Take care,
Char. -
Charlene Marshall replied to the topic Acute Exacerbation and Pneumonia in the forum Living with Pulmonary Fibrosis: 50+ 5 days, 15 hours ago
So sorry to hear this @wendy-dirks! I hope you’re doing a bit better since you wrote this? Thinking of you!
Char. -
Charlene Marshall replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 5 days, 15 hours ago
Hi @ellebleu
Sorry to hear of the frustrations and pain you’re navigating. It seems unlikely that a 5th pulmonologist will give you answers that 4 already haven’t, but you can always consider a second opinion. I know some people who are prescribed pain meds, but its not common based on my understanding for those of us with IPF/PF. Not sure if…[Read more]
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Charlene Marshall started the topic How Do You Cope with the Funeral of a Fellow IPF Patient? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 week, 1 day ago
Hi Forum Family,
This week has been a tough one for me, and I’m wondering: have you ever experienced survivor’s guilt when a fellow patient with IPF dies before you but was diagnosed after you?
I’m in the midst of publishing a column about this, but a friend of mine lost her Mom last week to IPF and the funeral was this past weekend. Her M…[Read more] -
Charlene Marshall replied to the topic SusilaBai – RIP ♥️ in the forum In Loving Memory 2 weeks, 2 days ago
Dear Rajesh,
I am so sorry to hear about the loss of your mother, and am sending you lots of love to surround you. May the memories you have together carry you through this difficult time, and know that our forum community is here for you. I’m glad this site was helpful, and I am hoping your mother is resting now and breathing freely.
Kindest…[Read more]
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Charlene Marshall started the topic Embracing Your Diagnosis Date in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 weeks, 4 days ago
Last week I wrote a column following the 6-year anniversary date of being diagnosed with idiopathic pulmonary fibrosis (IPF). In some respects, that day (April 7th, 2016) feels like it was just yesterday and in others, it feels like a lifetime ago!
While the 3-to-5 year prognosis for those living with IPF is outdated, it’s sometimes ha…[Read more]
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Charlene Marshall replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 weeks ago
Thanks for sharing your thoughts with us William! That is an easy visual for others to understand how difficult this disease is for us.
Char.
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Charlene Marshall replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 weeks ago
Thanks for sharing your 4 words with us, Gordon! I too am hopeful (for a cure). Take care, Char.
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Charlene Marshall replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 weeks ago
Hi Elle,
Thanks for sharing your thoughts with us and contributing to this thread. I’m so sorry to hear of your experience with GERD too, how awful. Unfortunately, this is a common thing a lot of people with IPF deal with, and there have been some good forum discussions about it. If you look on the right hand side of the screen you’ll…[Read more]
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Charlene Marshall posted a new activity comment 3 weeks ago
@geoff , thank you for sharing your 4 describing words; I couldn’t agree more with you. Hang in there!
Char. -
Charlene Marshall replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 weeks, 3 days ago
Thanks for sharing your top 4 words with us, Paul!
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Charlene Marshall replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 weeks, 3 days ago
Certainly agree with your choice of words Denise. Thank you for taking the time to share with us. Know we’re here for you!
Char. -
Charlene Marshall replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 weeks, 3 days ago
Love your attitude about this disease my dear friend, Steve. We have a lot to learn from you!
Hugs,
Char. -
Charlene Marshall replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 weeks, 3 days ago
Thanks for sharing your thoughts with us Bert.
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Charlene Marshall replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 weeks, 3 days ago
Thanks for sharing Linda. I certainly agree with you!
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Charlene Marshall replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 weeks, 3 days ago
Thanks for sharing your thoughts with us, Jeff. So important to stay positive as you say and I am watching for a cure on the horizon as well. Too many people have suffered from this damn illness!
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Charlene Marshall replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 weeks, 3 days ago
Thanks for sharing Ron!
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Charlene Marshall replied to the topic PF Symptoms: Aching Joints and Muscles in the forum Diagnosis Information and General Questions 3 weeks, 5 days ago
Hi Chris,
Thanks for sharing, though so sorry to hear you’ve been dealing with aching joints and muscles. I’ve heard a lot of people say its likely due to being chronically under oxygenated and our muscles/joints having to work harder, but that’s a hypothesis and not proven (to my knowledge). It’s likely connected to IPF somehow,…[Read more]
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