Nan

Terry thanks for the recommendation. I watched the movie today. It was good, love the Aussie accents lol. I have not been doing good. In my captivity ( AKA self isolation) I have been ordering bad food, baking with sugars etc. I have gained weight, and don’t feel as good as I should. I have to get back on board. I have started baking sour dough…[Read more]

My son told me that is China they were not allowed out without permission. They were allowed to go to grocery store every 3 days but only one at a time and the stores were monitored to not have crowds. They are lifted now, they can come and go as they like. He is still teaching online as schools not open yet. Here in Ontario Canada many many…[Read more]

How is everyone doing with this? Me, not so good. I did not have any weight to loose but in the past 2 weeks I have been eating a lot of sugary treats and white flour and i have gained 3 pounds, now i need to loose weight as that put me in the over weight category. I really need to get on board. I have done intermittent fasting and low carb and i…[Read more]

Hi Barry, thanks I am picking up tonic water today :). I have had PFTs a few times, the last time a decline was told my lungs are shrinking. Signs of restrictive lung disease they say.

I emailed the centre and told them waiting 4 months for a CT is torture, will see what they say.

Thanks everyone

Susan so glad appointment went well, we have enough anxiety in this life without doctors causing more.

I have so many cramps in my chest mostly. I talked to my doctor today and she had no suggestions. She did hear my cough though, i have 2 doctors in the last week hear my cough and say “that sounds horrible and like an ILD cough”. She gave me…[Read more]

There seems to be different opinions in the medical field. I watched the videos from the PFF sumit and they talked about not letting sats and HR fluctuate too much as it can lead to PAH. Last week I had my first appointment at a Large centre ILD clinic. Upon going there all i knew was I had radiation induced PF but mild yet I have a lot of…[Read more]

My son and daughter in law are not coming to visit. She is a nurse in China and all vacations for nurses and doctors cancelled. They now have a few cases where they life in the far north. Everyone is.wearimg masks now even here in Waterloo.

Hi Charlene, when I was in China in 2018 so many people there were wearing masks, it is a fashion statement. You can go into stores and buy all kinds of colours and designs, I can get my son to bring you some :). He is coming to visit but he is no where near the area with the infection. My son and his wife live in the far north. They will be going…[Read more]

I am reading this as I swallow my last bite of a cinnamon bun. OK I am in, the rest of the buns have been thrown in the freezer for company.

Hi Barry, sorry to hear of your challenges with pulmologists and clinics, I am curious to know your story if you are willing to share it. I have not tried tonic water but i will, thank you.

Barry, i dont have GERD that I know of, definitely seems skeletal just not sure why my muscles like to spasm lol. Mustard eh, interesting never heard that…[Read more]

Susan, that sucks and I feel for you, glad you at least have this online community to connect with. Seems me and you have a lot in common. I had a GP before, for 25 years, he was such a grump. He told me to come back in 2 weeks, then I did and he then asks why I am bothering him, ugh. We don’t have much choice in our docs here, I was able to…[Read more]

I have read on a few websites under “symptoms of PF” night sweats. Not all as i did not see it till recently. Interesting!

wow that is terrible. I had an oncologist d/c me because I refused to continue tamoxifen d/t the side effects and no quality of life. My family doctor was pretty discussed with the oncologist. Terrible how they make us feel eh?

Hi Susan, I was thinking of you at 3 a.m. when i woke up with muscle cramps in my chest. They use to think that cramps/spasms/Charlie horses where because of dehydration, they no longer think that. They really don’t know the cause but magnesium has been implicated. The problem with magnesium is we don’t absorb it well that is why it is used as a…[Read more]

Susan i can so relate, i get them too. Any twist at all and bang on comes a cramp. I have some stretches my PT gave me to do which really help but while driving hard to do and I have had them while driving. I took take magnesium, maybe it helps, not really sure. No one I have asked knows the answer so maybe here we will get more suggestions. All…[Read more]

I too life far from family and we are always travelling there, 5 hour drive and I am sick of it. They rarely come here. I will keep doing it as I can because my mom is 88 and that well so she cant travel but i do hate doing it. My husbands family always expect me to do everything, but no more!! i hope I can stick to that :). You are right Richard…[Read more]

Thanks for this Mark, interesting. I just got a new humidifier, hope it helps me. So far it has not been to cold and dry this year, but it is coming!

I am awake every night every one to two hours with night sweats. I thought is was menopause. It has been going on for 3.5 years. I have not had a good night sleep in the time. When are they going to stop? if it is compounded by PF i may never get away from it? Not a pleasant thought. I feel for you. It is January and i run the air conditioning in…[Read more]