A Brief Update

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 further deterioration. I’ve also been referred to a specialist rheumatologist as it won’t harm to have their input. I already have a lot of musculoskeletal problems due to Marfan syndrome & hypermobility, so osteoporosis was the very last thing I needed! I’ve been advised by my doctors to remove all hazards out of the way at home to lessen the chances of trips or falls. I’ll admit, I didn’t realise just how many ‘hazards’ I had lying around until I started looking for them. I’ve done my best to move them out of the way, but certain things can’t be moved. So it’s down to me to be extremely careful around the house. Not easy with hypermobile joints, flat feet and absolutely no steady balance! 🙈🤦🏻‍♀️. 

I’m sure some of you are wondering how I’m doing in myself, and I think the answer to that question is ‘not too bad’. I wish I could say I felt 100% but that seems impossible when you live with a number of chronic illnesses. I try my best to manage the various symptoms of my connective tissue disorder every day, but it’s relentlessly tiring. However, I still think it’s fair to say that I’m doing a lot better than I was this time last year. I’m now slowly but surely starting to gain weight and thanks to my feeding tube, my body is finally getting all the nutrition it needs. I dislike the nasal tube changes more than anything though, but I can’t complain because they really have served me well. I still run 12 hour feeds during the night and I know that sounds like a long time to be connected to a feeding pump, but it runs at a super slow rate which drip feeds me throughout the night. I could increase the rate so that it would run through a lot faster, but we discovered during my hospital admission that I can’t tolerate it at high speed due to my dysmotility and we decided a slower rate is best for me. 

I have an appointment with my gastroenterologist this week to discuss converting my NG tube to a PEG tube which would require a surgical procedure. I’m not sure how I feel about that just yet but he feels it would be much more comfortable than living with a nasal tube and having it taken out & reinserted every 2-3 months. I agree- it would be much more comfortable, but I’m worried about putting myself through surgery when I already have a lot of health problems. I’m willing to have a lengthy discussion about it and give it some serious thought though. Because I know it would be in my best interests in the long run. I’ll be back with another update after my appointment to let you all know how it went and as always, thanks for reading. 🩷.. X