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, 31 March 2015

Getting My Head Around It

Needless to say, I have had some restless nights recently. I don't mean simple stuff like waking up and needing to do the simple stuff. Some nights I've been caught full on sleepwalking and sleep-cleaning. I am struggling to get my head around all of it. I mean, who wouldn't? Its hard knowing what we know but at the same time, I'm clinging on to something that someone can do. This can't be all there is. It just can't be. And I will be willing to try anything if it meant a life off the o2 leash and not having to face the hard part of my condition. I'm still struggling with the fact that this could (and should) have been taken seriously so much sooner had that "doctor" taken the time and effort to do more recent tests instead of making me feel like crap and like some kind of weirdo. I guess its all well and good when you get to walk away and not see what your arrogance and stupidity (taking me off 3/4 of my meds without testing is about as stupid as someone gets, especially when they didn't acknowledge the effect it had. Luckily I demanded a 2nd opinion because it was agreed that was a really bad move) means for someone.

I hope they take comfort and solace in that they don't have to watch me go through this. A life with lung failure is hard. Not to mention how hard this has hit my family. The fact that this could have been avoided doesn't give me solace or comfort. My asthma could have been managed better and much sooner had the right tests and care been given, meaning I wouldn't have developed scarring on the lungs (pulmonary fibrosis) which is complicated with infections. I don't know exactly what's going to happen now. Maybe one day we'll get a miracle and I'll get the gift of new lungs, ones that work properly. I'd take nothing for granted if that happened. But for allowing this, I think the people who should have done their jobs should be held accountable for that. Because right now, my family and I are going through hell and that's not right.

Nothing is going to fix how we feel either. My personal feelings here are the feeling of being cheated. I see people and they get to live long lives however they like and I'm on a knife edge. There have been times where I have honestly felt like this was the last time and how I got through was nothing short of amazing. I feel disappointed that the "doctor" who could and should have done something or safeguarded me failed. I'm angry because I feel so trapped. Powerless, because I can't put this right. What I'd like is a proper apology and for that "doctor" (inverted commas because doctors are supposed to help people, this guy didn't and he let me slip through the net and I've suffered because of it) to stop practising. If they did this once, how many others has he done this to? How many families have been destroyed because of lost loved ones because they weren't taken seriously or helped?

The Alex has a bad reputation and if this kind of thing is accepted then frankly they need to buck their ideas up. I want to know why this happened and why my previous complaints skirted around the fact that someone messed up, they didn't do the right tests when they should and missed a vital chance to help me in favour of outdated results (off outdated machines) which were complete contrast to what was presented to them. I also want to know why parts of my medical records "disappeared" over Christmas and I wonder if the fact that these were totally ignored or hidden away (probably because they'd have proven my complaint and made the hospital look bad) is trust policy? I just want the truth and for this practice to stop. I don't think mine is the only case where medical records are destroyed, changed or "misplaced" because of an inconvenient truth. Save the Alex? Save it from itself!

I was discharged in pretty much the same state I was admitted in, the only improvement was that they started getting the infection under control and because I showed a slight improvement, the treatment got withdrawn. Again. Its a week since then and the painful breathing is back and I'm starting to cough more. I have an appointment with the doctor this week so maybe they can recommend something other than "wait and see". I do have emergency antibiotics on hand but I'm going to get a sample before starting (preferably before my appointment) so we can see what we find. What we do know is one thing, I shouldn't have been discharged.

As for the complaint? Well I will get this exposed and sorted because mine is a life that has been severely affected by it and well, I don't want another family going through it.

Wendy xx

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