Wendy Dirks

Hi, Mark –

Interesting question about fevers! For many years I have avoided anything that reduces a fever as our immune systems work better at higher body temperatures than normal. Only if I am desperately ill or my body temperature has reached dangerous levels will I take anything or if the fever is accompanied by unbearable headaches or other…[Read more]

Thanks, Mark! I’ve been practicing yoga for almost all of my adult life and as my illness began to interfere with my ability to exercise, I was afraid I would have to give it up. It’s wonderful to have a modified practice.

PS I was supposed to begin physiotherapy this week as part of palliative care but the covid-19 cases in England and especially where I live are out of control again. I’m pretty disappointed.

I am doing a “Trauma Sensitive Yoga” class 2x a week via Zoom. It’s perfect because it deals with emotional issues and techniques for dealing with them as well as gentle movement.  I highly recommend online gentle or chair yoga classes with teachers trained in accessible yoga or trauma sensitive/informed. Great stuff! And singing!

Hi, Marsha –

This isn’t particularly helpful, but I wanted to share with you that I have really painful muscle spasms under by breasts fairly frequently. I have never had any surgery of any kind there although I broke my ribs several years ago. I also get terrible spasms starting in my mid-back that radiate around under my arm and end under my…[Read more]

Karen, I never feel guilty when I eat chocolate! It’s just a pleasure!

On a more serious note, that’s one of the nice things about intuitive eating – if you give yourself permission to eat whatever you want, after a while you discover that you don’t really want to overindulge in anything. I used to avoid buying ice cream and then occasionally buy…[Read more]

Hi, Rene – I have hypersensitivity pneumonitis and my appetite has been diminishing steadily as the disease progresses. I think it is probably due to the oxygen required for digestion rather than any medication as I have only recently (3 weeks ago) started any medication for my illness. The food aversions did start after I started CellCept (MMF).…[Read more]

Hi, Char – The biggest aversion I am having is to meat. I doubt I’ll ever have an aversion to sweet things. I can eat them no matter how I feel, especially chocolate. I guess that’s not a good thing, LOL!

Hello again, Jon! I’m now starting to take MMF (Cellcept) and rather than increasing the dosage every month, I am increasing it every week. I’m at the end of week 2, now taking 1000mg, 1500 next month, and then stabilise on 2000mg daily if my white blood cell count remains at appropriate levels. I wasn’t aware that it was expected to increase FVC…[Read more]

Hi, Reshma – My husband tells me I make all sorts of bizarre noises when I sleep, especially if I’m on my back. Apparently they are high pitched moans. As for the excessive coughing at bedtime, that also happens to me and for some months now I use a very simple remedy – cough drops. As soon as I get into bed, whether at night or during the day for…[Read more]

Pulmonary rehab is fabulous and I once was interviewed for a British Lung Foundation video that promotes it in doctor’s offices around the NHS. It’s very clear that my PF has progressed while in lockdown and I just had a series of medical appointments confirming this. I am sure I am also less fit than I was because of not going to my pulmonary…[Read more]

Dear Sita,

You are a very kind and loving person to care for your mother that way. What you say makes a lot of sense and I understand now. I’m sure a social worker can help you all make the appropriate decisions especially if you find one that is aware of the cultural differences. But I agree with Susan Howitt – it doesn’t sound as if she needs…[Read more]

Has your mother’s physician spoken to her? I’m somewhat shocked to think he has had this conversation with you without telling her. I personally would be very upset if my doctor spoke to my husband about hospice care and other end of life issues without speaking to me first. I’m 67, not much younger than your mother. The principle of informed…[Read more]

I should also add that I discovered that having ILD is a risk factor for PE, just as having two prior DVTs is. It still irritates me that nobody could connect the dots, just see a fat person sitting in front of them. I’m not alone in this kind of experience and it is infuriating. And no, I’m not going to diet, which is useless and works in less…[Read more]

It took five years for my diagnosis of hypersensitivity pneumonitis and even that was accidental. I had PE five years ago and that took several weeks to diagnose. First I was told my breathlessness was because I was fat. I went home and went on an exercise binge and a week later I couldn’t walk and my lips were blue. Then I was diagnosed with…[Read more]

Hi, Jon – I also have chronic HP but I am not yet taking Cellcept. I was due to have a CT scan and complete lung function tests last month to determine if I was now a candidate but because of the pandemic, the appointments have been postponed indefinitely. I live in England and here everyone who is considered extremely vulnerable to Covid-19 is…[Read more]

Hi, Michael – Thank you so much for posting this. It sounds really intriguing! I’m also interested in what you say about immunosuppressants. I’ve been very nervous about starting them with this virus raging. I’m considered “extremely vulnerable” here in the UK, which means I am “shielding” at home until the end of June. I’m feeling a bit depressed…[Read more]