Lu's News

Hi everyone, I hope you’re all okay. I’m doing as well as I possibly can under the circumstances. I know I haven’t been a consistent blogger this year but it just seems like all my time is taken up by appointments & looking after myself. I’m trying to get back into the swing of blogging again though. Thank you for sticking around. I really do appreciate it. I found out recently that my osteoporosis diagnosis is much more severe than I first thought, and it needs prompt treatment. However, my consultant has told me to avoid the prescribed medication at all costs because it could potentially worsen my GI conditions. He’s advised my GPs to look into alternative treatments but they don’t seem to know what route to go down because of my complex health history, so my case has now been referred to the medical advisory board for them to hopefully make a decision after taking all my health problems into account. The treatment isn’t likely to reverse my osteoporosis, but it could prevent fur

Over the last few years, I've been very open about my life with Marfan syndrome and numerous health conditions, but I haven't been quite as forthcoming with those around me because if I'm to be honest, I struggle to fully express the significant impact that chronic illness/health conditions have on my day to day life. I don't look like someone with chronic illnesses. I don't use a wheelchair, a stick or any disability aids, so I'm afraid of telling some people in case they think I'm over dramatising it. But that is far from the truth. I've lived with chronic pain for a long time now, gradually building up and becoming more widespread over the years. I've learnt to become good at pushing my unpleasant physical sensations aside to get on with my everyday life though, so no one would ever guess it. No one would know (unless you are my Mother) that on a typical day I experience several different types of pain and discomfort throughout my body, ranging fr

Part one:  https://www.marfantrust.org/articles/201-the-critique-of-my-marfan-physique Part 2:  https://www.marfantrust.org/articles/212-the-critique-of-my-marfan-physique-part-ii Part 3:  https://www.marfantrust.org/articles/the-critique-of-my-marfan-physique-part-iii Part 4:  https://www.marfantrust.org/articles/the-critique-of-my-marfan-physique-part-iv Part 5:  https://www.marfantrust.org/articles/the-critique-of-my-marfan-physique-conclusion Part 6:  https://www.marfantrust.org/articles/lucy-s-blog-the-critique-of-my-marfan-physique-part-vi Part 7:  https://www.marfantrust.org/articles/lucy-s-blog-the-critique-of-my-marfan-physique-part-vii  

Last month it was Marfan syndrome Awareness Month & I was asked by Marfan Trust to write a short blog about why I think more awareness needs to be raised amongst medical professionals. I've written a little bit about myself & my own experiences. I could've gone on forever about why I think awareness is so vitally important, but I tried to keep it quite brief, as I'm sure you'll all have your own reasons for why you think more awareness needs to be raised. If you'd like to share them with me, don't be afraid to get in touch. Thanks everyone, you'll find a link to my article right here. 💓 https://www.marfantrust.org/articles/lucy-and-doctors?fbclid=IwAR0mI483m5jH-OQ0Y1feqEnRRIlhJgTLtFZ-6ekl7WRHVtWQL-a6QrGHXuY

So, today started off okay. Breakfast went down well apart from feeling bloated afterwards, but that's normal for me. Lunch was a really quick high calorie milkshake because I was going out, and I knew that if I had anything with it, it would either make me vomit, or leave me feeling too bloated. I still felt slightly sick just from drinking the milkshake, but it was tolerable. I came home & had beans & a small pasty for tea, washed down with a cup of green tea. I was really hoping for it to digest well, as I just couldn't be bothered. I had backache & joint pain which is standard for me after going out. So I just wanted to rest without any digestive drama. It wasn't a big meal, so I expected to feel a bit bloated but nothing else. However, it didn't digest at all & within two hours, I'd made numerous trips to the toilet, and vomited around half of it back up. I know I should be used to this crap by now. But I shouldn’t have to get used to it, should

Hi guys, I’m back with digestive disarray part 2 🙈 I don’t really know what the point of this blog is to be honest, but I find it therapeutic to blog my way through testing times. I find it easier than turning to those around me, as I feel like they’d never understand my situation. My symptoms of Marfan syndrome & the associated conditions are so unpredictable that I barely understand them myself, so how can I explain them to others? How can I explain that some days are better than others when I don’t even understand that myself? I don’t know why I suffer more some days than others. I don’t know why my symptoms are severe one day, but okay the next.  Yesterday’s digestive disarray wasn’t quite as bad as the day before, but it was still hard to deal with. My lunch & breakfast went down without too much drama. I felt a little bloated & sick but nothing too dramatic. I was hungry yesterday because my stomach was pretty empty after vomiting so much on Sunday. So I was ready fo