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 Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Type 1 Brittle Asthma, Various Allergies, Neutropenia, Chronic IBS, Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. 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.

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

Tuesday, 26 August 2014

Unanswered.

The more I look in to bronchiectasis, the more it bothers me that it was never picked up on before, especially when you consider that there were so many opportunities to catch it. It wasn't as though I never ever went to the doctor or hospital and had never had any scans or tests or anything or the "classic" symptoms of the condition, things like constant chest infections, worsening shortness of breath, not to mention the knock on effect it has on my asthma. All I knew was there was this mysterious "shadow" on my X-Rays which no one seemed to be able to explain what it was and why it was there, in fact the common thing after they saw it was on every X-Ray since last November is to try ignore that it's even there! The most common explanation was that it was part of the scarring to my airways after years of chronic severe asthma and more chest infections than I dare to count.

I had a CT scan in March during a particularly long and difficult admission where I was in for nearly 2 weeks. It followed a life threatening asthma attack, OK so I didn't do myself any favours by trying to ignore it for days because I didn't want to go to the Alex (who does?!) and the doctors were wondering why I was only getting so much better at any one time and then declining so fast again. By this point, I had been admitted to hospital about 4 times in the preceding 6 months. We were told that the consultant radiologist who reviewed my CT scan had reported that apart from scarred areas which are typical of my condition, my CT didn't really show anything out of the ordinary. When I was finally told that the scarring was very pronounced and there had been airway damage in June, I was daunted but the promise that if/when these lungs are done, they would get me on the transplant list but until then, it could be 5-7 years and I should make the most of it. I was started on home oxygen and to be honest, since being on that, my quality of life has improved. Since being on it, there has been a huge turnaround in my life. I have a better outlook. I go out and enjoy myself. Heck, I even take pride in my appearance and enjoy making sure that I look as pretty as possible before going out.

So being told that on top of everything else (the asthma, the scarring and all the other conditions I have) that I had actually developed bronchiectasis as shown in my CT scan (yeah, the one in March that a consultant radiologist confirmed, during a case with another doctor, didn't show anything inconsistent with asthma). So I could have been had this condition and it being left untreated for 5 months and we didn't know. It bothers me because had this been picked up in March, we probably could have avoided the subsequent attacks and hospital admissions, we could have gotten on top of it BEFORE I needed home oxygen and the life threatening attack I had last week could possibly have been avoided.

I want answers.

I want to know why it was never picked up on before.

I want to know why medical staff involved with my care had actually lied in my records.

I also want to know why parts of my medical records have "disappeared", especially ones where clear indications were shown of my state of health and quality of life which would have been detrimental to the medical team involved and forgeries and falsified ones took their place.

I want to know why this seems to have become a common practice (I spoke to a few people who have had the same things happen. Volumes of medical records "going missing" and their existence being completely denied) and lastly, why is it even allowed to happen? Our medical records are supposed to be accurate and credible and show an objective portrait of a person's past and present health to allow a prediction of future health. These notes, whether they're on computers or paper, should follow a patient from the cradle to the grave and they shouldn't be forged or changed just because one doctor doesn't like what he sees or if a complaint is brought against them, could be detrimental to their career. After all, it is them who make the decisions in to how any health problems are managed, so I wonder, if I can't trust the doctors to make credible and accurate notes on my health and those notes not be corrupted, then in all respect, who can I trust? As I say, I want answers and there is no way in hell I am backing down until I get the, and the wrong things put right.

But enough about all of that, on a bit of a nicer note (music pun coming up) I have been learning some more songs on guitar. I love playing but haven't for some time because playing does take a lot of energy, so I play in short amounts and if I have to, I boost myself, especially if I'm playing and singing at the same time. The song I learned this weekend was one by a man called Voltaire called "USS Make Shit Up" which is about Star Trek and how they seem to make it up as they go along. I have watched a fair amount of episodes and it does seem a bit of a "Well this works here, but suddenly it won't anymore" which is quite entertaining, but it started in the 60's and the fact it's still going is something cool I think. I don't really like it as much as other things but I can respect it's longevity. The funny thing is that Voltaire is a huge fan of Star Trek and his observations on the series are both funny and affectionate. The music is fairly simple but there's something satisfying about learning a new piece, even if it is just a few chords. I wouldn't fool myself by saying that I am the best guitarist in the world, but I enjoy what I do.

I do wish I could play the flute again though. When I was younger, I took so much pleasure in playing the flute and my certificates for grades 1 and 2 are still on display in my bedroom because I was so proud of myself for getting them and achieving something. It may not be the most amazing thing to get, but having something to look back on and say "Yeah, I did that." is really a morale boost. Especially when I feel a bit rotten. That and some of the other things I enjoy like retro cartoons or listening to cheesy J-pop. Right now the song "Pon Pon Pon" keeps getting itself stuck in my head. The song basically translates to letting your crazy side out and do whatever makes you happy. The funny thing is when I was singing along to it in hospital, the nurses were wondering what I was on! It's one of those songs that you can't help but smile when it's on. 

Ah well, I guess I am just going to have to see how things go.

Loves
Wendy xx

1 comment:

  1. As you know, I am always here for you. It doesn't matter that I am 100 miles away. Give me a phone call, a text, an email, a facebook message... And I will be there.

    ReplyDelete

Thanks for your comment. I will review it as soon as possible!

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