For life's little ups and downs.

A rather quirky, funny and sometimes daunting look in to the life of someone who has a lot of health problems but does their best to keep positive. Punctuated by guinea pigs, anime, superheroes, transforming robots and cross stitching.

I started this blog to tell my story, about who I am and what I do. On top of the health problems and raising awareness for those, I also use my blog as a way to help promote other causes, particularly ones which affect the most vulnerable. I live with a number of different and complex health problems but I refuse to let anything get me down. I know how it feels to be discriminated against or thrown aside. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.

About Me:

A blog about life. I live with Type 1 Brittle Asthma, Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Various Allergies, Neutropenia, Crohns Disease (my IBS was rediagnosed as Crohns), Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I have recently also been diagnosed with Sleep Apnea (which makes me stop breathing in my sleep) I live with these conditions, but I refuse to let them keep me down and out. I still try and make the most of my days despite being so poorly and having to rely on my wheelchair, nebulisers, nearly 50 pills a day and 2l/min of oxygen and CPAP.

I'll flap my broken wings and erase it all someday... You'll see.

Tuesday, 27 July 2021

More Complications

Ever find something out and not even be prepared for it, yet it making sense at the same time? I had one of those moments recently and my general response was "great, just something else to contend with". It turns out, on top of everything else, my adrenal glands have stopped working properly and I will never be able to come off prednisolone altogether.

About Prednisolone: (AKA: pred, the devil's tic-tacs)

Prednisolone is a medication used to help control asthma. It's an oral corticosteroid and believe me, it's not nice stuff. Prednisolone has been so problematic but its literally what keeps my lungs in check, or at least partially. I've been on the stuff for literally years now, whether it's post admission or daily maintenance at the lowest dose possible and it has literally taken a heavy toll on my body.

Osteoporosis - otherwise known as brittle bones disease. Meaning that I am more likely to crack or break bones and it has erroded parts of my spine. My back problems started during childhood but now they are getting worse due to my weak bones. 

Reflux - something I always had a genetic predisposition for but now it's something that I'm dealing with daily.

Liver issues - something we don't exactly understand (yet) but we are monitoring it.

And now 

Adrenal gland failure - this only came to light recently. Those little glands do a lot of work and produce cortisol naturally. Basically mine have decided not to work anymore so my body relies on steroids to function. Missing any doses of prednisolone can actually be lethal. Adrenal crisis is scary stuff and it's something else I've got to be careful of. It's all about figuring out how best to manage it and always making sure to take my medications as needed. 

Whats scary is that there's been times where I had forgotten to take my meds or the pharmacy didn't deliver them on time (the worst time was just before Christmas and they "lost" my prescription, including a prescription for morphine..not at all fun). If they did that now with the prednisolone, my life will be in extreme danger. It worries me a bit but I am trying to take everything as I usually do, in my stride. I do have to be more careful and keep an eye on things, signs that could be worrysome and things to keep an eye on. 

Another thing that I have been doing recently has been getting my teeth checked. I have always had a phobia of the dentist, having ANYONE touching anything in my mouth just makes me feel all icky inside. My teeth in themselves aren't bad. Considering all my medication and general health its little more than good luck that I've not got a mouthful of fillings and rotted teeth. I've just been having issues with my wisdom teeth again. I won't go in to too much detail now but the right side ones are being particularly troublesome but hopefully we can sort that out soon. I'm worried because, due to some phobias that I've had since I was small, I don't want to freak out. 

I'm trying to keep as calm as I can. During the heatwave over the last week, its not like I've felt like much anyway. So forgive me for smiling and enjoying the rain as it rattles through the trees in the back garden, accompanied by the sweet notes of my music boxes. I find them soothing and maybe they may help during my appointment. 

Til all are One
Wendy xx

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