Not dead yet- came close, though. In the beginning of September I had breathing problems, was told to go to the A&E (emergency room)-which I thought would kill me off faster than whatever was wrong with me-and turned out to have blood clots in both lungs. I resisted going-but was told that I would be dead by the next day if I didn't go. So off I went. Talk about being incredibly lucky.
I was on anticoagulants for six months-SIX months-before someone decided to do a CT scan to see if the clots were still there. I self injected every day-and every day I felt like I just couldn't function. It wasn't just a side effect of the blood thinners. It turned out to be a side effect of the blood clots. I know that because I pushed and pushed hard-and pushed some more-for some answers.
I once told you that the best piece of advice I was given as a teenager came from my grandfather. He said that I should always remember-especially when I was old enough to start working-to ignore the monkey and go straight to the organ grinder. So many times I ignored that advice and so many times I ended up shooting myself in the foot. Now I know better. But-you only persevere if you don't mind making enemies. I've got loads of those now.
I started to insist that I have a scan in December. That would have shown progress-or regress. But I wanted to know, because I felt that bad. The NHS being what it is (crap), had nurses taking the clinics. The doctors were obviously far too important to take the time to talk to a patient. I was told by a haematology nurse that I wouldn't have a scan until April. Why not? Remember that I was fed up with being fobbed off and started to push. Her answer was that if I didn't see results I would be upset. Seriously!
Now I last wrote in January, and I finally saw a doctor who ordered the scan. But-this is after the first haematologist forgot to order it! And I still had to self inject, so I was losing a lot of weight and I was pretty incapacitated. I wasn't sure which was worse: the condition or the cure. The CT scan-which was supposed to be reported the following week-wasn't reported for over a month. The bottom line? No blood clots. However, I will have to take tablets, probably for life. Nobody knows what caused the clots, how long they were there before I showed any symptoms, and-nobody has a clue,
But the best part of the story is about the antibiotics that I have been nebulizing for the past fifteen years. The family doctor suddenly decided that she wasn't going to prescribe them any more. Apparently they're too expensive. That's because they work.
No matter how sick I felt I knew that I had to start yet another fight. Organ grinder. The process of getting what I both need and want started in the beginning of January, and is far from over. But-threatening to go public, making a formal complaint against the hospital (I can tell you another time about that one), and, of course, the possibility of a lawsuit made the hospital capitulate. I've got enough of the antibiotics for the next three months. They're all probably hoping I'll be dead by then so they'll save money.
That brings you more or less up to date on the big stuff. I'm determined to have a life-finally-because I've spent the last six months (now nearly eight months) both fighting for my life and fighting for something that resembles justice. I can tell you that if you have the patience and the perseverance-you will win. Even if you don't win, you will never lose. It takes a fight. It also takes the refusal to listen to the monkey.
Now it's time for a very strong coffee...
